Lesley Nord

@lesley_notd | contributor
Lesley is a retired teacher and married mother of four. She lives in Shepherdsville, Kentucky, with her best friend and service dog, Bella, a Newfoundland. Bella is also certified and insured as a therapy dog, and together they volunteer at a middle school.
Community Voices

When you learn a friend stigmatizes Mental Heath Issues

As a person with multiple health conditions, several of which are disabling, I have learned not to share some of my #MentalHealth issues and I rarely discuss them even with close friends.  Across the years, I have lost friends, been subtly discriminated at work when when any mental health condition was known, and my family has disowned me because I do not fit in to their mold of “being perfect”, which includes no divorce and no mental health issues.  Recently I was somewhat surprised by the reaction of a friend in my community of handlers with service dogs (which by definition all individuals have disabilities).  I was hurt by her actions and our friendship was irrevocably changed.  It was clear that despite the fact she was a person with disabilities, she, too, discriminated against people with mental health issues.

My friend and I are both administrators of a large service dog organization.  There are eight  administrators and approximately 5,500 members.  We provide education, information, and resources to our members about training and regulations regarding service dogs to assist owner trainers. Over the past two years we have become quite close and shared personal information about ourselves, our families, our health and our daily lives.  I have shared limited information about my mental health occasionally mentioning my #Anxiety, being depressed, and noting that I am on the spectrum.  I have shared more about the tasks my dog does for #Hypoglycemia.  My friend has an SD for physical issues.

Recently, I faced a number of stressors in my life. My marriage had issues.  My daughter, who lives a great distance away, was relying on me for emotional support and requesting guidance but was continuing to make poor decisions in a situation that continued to endanger her and my grandchildren.  I was getting very poor sleep and later found out I had severe #SleepApnea.  I was also dealing with blood pressure issues.  I was having panic attacks and feeling depressed.  I needed something to give.

I spoke to my friend, who is not just a fellow administrator but a #Disability advocate, and mentioned that due to the stressors in my life, some of which I shared, I might take a mental health break for a short while from my administrative duties.  Other administrators have done this before for various reasons including mental health.  The way it is typically done is that the administrator simply does not participate in administrative duties until he or she is ready to resume.  My friend listened saying “um hmm” and “that sounds good”.  I never expected her to go behind my back in the way that she did.

I contacted our lead administrator shortly after speaking with my friend and shared with her that I needed a mental health break due to the stressors in my life and noted a couple of them.  I also requested that she tell the other administrators for me.  She was supportive and agreed.  At this point, all was well and things seemed to be going in the direction to relieve some stress so I could concentrate on my life issues and mental health.

I was focusing on my family so I was not checking in my group or the administration and its notes.  I had no idea what had happened.  The first signal that I got that something was up was the lack of daily communication with my friend.  Usually we talked each morning over coffee and several other times a day.  I would call and she would have little to say. She did not call me. Conversation stopped.  I was sad and upset but was busy so the first couple of days I just let it go.

After a week of silence, she called to request some information I had.  I provided it to her.  During the course of the conversation, she expressed her frustration with psychiatric service dogs calling them “purse puppies” and “what tasks do they really do, come on”?  “I know I should not be this way but most of them are untrained and are there for comfort or just do DPT”.  My friend was clearly prejudiced against mental health disabilities and Psychiatric Service Dogs.  I felt sick to my stomach.  She had only called for information and did not realize what she just revealed to me.  It made me wonder what was going on with our group.

When we finished our conversation, I checked the group information. I had been removed as an administrator.  I called our lead administrator and she admitted to being swayed by (false) information told to her by my so called friend.  She inflated my mental health issues not knowing what they were in an effort to remove me because she is biased. Since my conversations with my friend are by text due to hearing issues, I could back up my claims that I was not in the state my friend described. I was reinstated to my former position by the lead administrator.

Unfortunately, this incident reinforces to me  the concept that mental health stigma is not only real but it exists within the disabled community.  Until everyone levels the playing field and accepts all people where they are as people, stigma will force people into hiding and will marginalize and penalize those with mental health disabilities.

1 person is talking about this
Community Voices

Asking Forgiveness From Your Parents is Freeing

This is a copy of the letter I sent my parents asking forgiveness when I realized how my mental illness had impacted our lives.

Dear Mom and Dad,

Sometimes it takes a great deal of time to gain perspective, to become healthy and to have the opportunity to be a parent oneself to truly grasp the awesome responsibility and wonderful job you did parenting me, a person disabled by mental illness. It takes even more time to ask forgiveness for being difficult, negative, believing and saying you did not love me and were terrible parents, and for all the dreadful things I did.  I was quite ill but my words and actions are still my responsibility.  I am truly sorry for all the hell I caused while I was so sick and I am begging your forgiveness now.

Now I know I was I was always loved, provided for, given the best education and offered extra curricular activities, raised with standards, structure, values and church, and my #MentalHealth needs were attempted to be met.  Looking back with hindsight, I can see how skewed my viewpoint was due to my mental illness.  You did an excellent job of parenting.

I had a rigid view of the world as well as being severely depressed.  I had no ability to comprehend humor, sarcasm or read facial cues. Humans were a  mystery to me and communication failure was common.  As a child, this was often expressed as tantrums when rules and routines were not strictly followed.  As I became a teenager and young adult, I blamed you, my parents.  I felt you did not love me and changed the rules without warning when I was the one who did not understand the rules or their flexibility.  Though I was an excellent student and succeeded in structured formal social situations (due to your parenting), I was a failure in making friends, dealing with family or managing any type of relationship and functioning in unstructured social situations. I blamed you for not bringing me up with the love and skills I needed to succeed in the world.

For a very long time, I made terrible friend and relationship choices despite your wise and subtle advice. I paid huge prices emotionally, physically, mentally and financially.    I lost you to mental illness.  Though we live in the same town, we have not seen one another in over fifteen years. You know how it is with Courtney, my daughter who is also mentally ill.  I was not there for the births of my grandsons and she moved 1,500 miles away.  Sadly, losing her and my grandsons was a combined result of both our mental illnesses.  Not being close to family has been my greatest loss and I realize it is a result of my mental illness and behaviors.

After forty years, many treatment options and much therapy, I am finally on a medication regime that works for me.  With the help of a wonderful therapist, I have taken a hard look at my past, present and future.  I was able to understand how my mental illness impacted my view of the world when I was ill.  I began to learn coping strategies.  Suddenly humans and communication made sense to me.  At first I had to overcome the deep devastation I felt when I understood how thoroughly my mental illness impacted my life, skewed my understanding of the world and had destroyed relationships.  As soon as I could  I reached out to you and Courtney to renew ties via text and email.  I have been blessed to once again have contact with you.

It is important for me to ask for your forgiveness for my unacceptable behavior and words brought about by my illness.  I hold myself accountable for them even when I was not medicated and did not have coping strategies.  I own my behavior, it does not own me. I am truly sorry for the many hurtful things I have said and done and do ask your forgiveness.

Regretfully,

Your daughter

Lesley Nord

Things to Consider Before Getting a Service Dog

My service dog is my lifeline. We are a great team. Part of becoming a team is the preparation. Here are seven things to seriously consider before deciding to get a service dog. 1) What tasks will my service dog do to mitigate my disability? Tasks or work that directly mitigate your disability differentiate your service dog from a pet. 2) Am I ready to spend my life with a dog, who has the brain of a toddler and will always require extra steps and preparation (though s/he helps me and gives me freedom)? Service dogs are great help, but they require guidance and direction. Living with them and going anywhere with them requires extra planning and preparation. It truly is a change in lifestyle. 3) Can I deal with the extra attention, positive and negative, that a service dog creates? From access challenges, personal questions about your medical history, children and adults distracting your dog and petting without permission, to individuals wanting to learn about service dogs, you may be overwhelmed by the number of demands on your time when you have a service dog. 4) Do I have the money for the initial expense of the dog, the initial training, plus the ongoing training and care and any emergencies that may arise as well as supplies?  The initial cost of a service dog, training, vetting and supplies easily runs $10,000-$40,000 for the first year and $500-$1500 annually if there are no emergencies. 5) Am I prepared to deal with training for the life of the dog? This takes time, physical and mental ability, money and occasionally the help of a trainer. 6) Am I prepared to groom and exercise the dog?  Does my disability impede my ability to complete these tasks? Grooming can be done by you or by hiring someone to groom the dog. Usually exercise is done by the owner. 7) How will my family and friends accept this new addition to my life? Bringing a service dog into your life can change the dynamics of relationships. It can be similar to adding a child, because a service dog generally is at your side and goes everywhere with you. It is something your spouse/family should be on board with and hopefully your friends support and understand. We want to hear your story. Become a Mighty contributor here .

Vanna Winters

How It Felt to Watch Kavanaugh Hearings as a Sexual Assault Survivor

“I bet he dumped her and she was pissed,” the officer jokingly said. His partner chuckled back in confirmation. As I wait in my living room to give my statement about my rape, I hear the two male officers that have been dispatched to take my statement discredit me before they even step into my house. It took me months to utter the words to another human that I had been raped. I held back as long as I could. I knew, inherently, what I’d be up against once the words rolled off my tongue. Harboring the silence had become more painful than the scrutiny I anticipated coming face-to-face with. Three months of sleeping curled up on my closet floor because my bed, where I had been raped, I could no longer touch. Three months that no one noticed me dying inside from the pain I was holding in. Three months of living in my own crime scene. “That’s why we have rules about bringing boys over when I’m not home,” was my mother’s first response when I was able to tell her I had been raped. But all I heard was that I, singlehandedly, was at fault. I failed. I did something wrong. The reaction from my own mother only reaffirmed the narrative that had kept me silent for months. As I went through the process of telling my story and reporting, no one, including my own parents, gave me any reason to believe otherwise. I was 15. It was my first sexual experience. The first impression I’d have ironed into my mind about what it felt like to have sex used as power. A connection that my body was not my own. A predication that I was an object first and a person second. As I listen to all the headline stories bombarding me right now, I feel a very clear message is being overlooked completely. The notion that we, as the victims, have anything to gain from reporting rape, at any point in time afterward, couldn’t be anymore obtuse. When in fact, we have everything to lose. Imagine, if you will, living through just one of the stories you’ve heard about in the news. Imagine holding onto the shame. Imagine being told by society that whatever happened, you must bear some responsibility. Imagine summoning the courage to come forward in a world that puts the burden of proof on the woman. A world where far too many that find the courage to step out of the shadows of their shame and guilt have to watch people point fingers at them. Or, for the 11 out 1,000 reported cases that go on to trial and seven that result in conviction, having to go through the agony and re-traumatization of prosecuting their attacker only to watch them walk away unscathed by the law. This is our reality. We not only have to survive the abuse, but we also have to survive the world’s reaction to it. We have to muster the strength to withstand the pressure from all angles that a victim, by reporting, has somehow become the victimizer. “But it happened X amount of years ago, why can’t you just let it go? Why bring it up now?” It may have been decades ago, or days — just an insignificant moment in time that he can hardly recall. That same moment is burned into our minds. It plays over and over. Its effects are stamped on all aspects of our life from that moment forward. For what was just a day for him turns into a lifetime of pain for us. A pain that isn’t respected or handled with the care it deserves. It’s difficult to recover from assault when we live in a world that seems more accepting of protecting the offender than seeking justice for the victim. When these men aren’t held accountable for their actions, it sends such a clear message to society that women are still less than. When seven out of 10 victims never report their rape to police, it isn’t difficult to see why. I watched this week as yet another victim was torn apart publicly. All while the people attempting to discredit her allegations crow loudly about what she’s gaining from deciding now was the time to come forward. Watching it all pulls me right back to my own living room floor 18 years ago. Everyone I placed confidence in as I shared my story with echoed the same message — that I’m responsible, that I’m to be shamed, that I’m to be silenced. It all still rings in my ear and lingers heavy on my heart as I continue to heal from what was “just one night in high school.” Regardless of whether you were blamed, shamed and overcame it all to report: you are brave. If no one believed you or was willing to listen: you are courageous. If your attacker was prosecuted or walks free: you are strong. To anyone that has kept their story a tightly guarded secret: I see you and the strength it takes to hold on.  If you never found the safety to speak to your pain you are still just as brave and courageous. Reporting does not erase the suffering. It won’t heal the wound or redirect a lost path. Reporting is an attempt to hold someone accountable for their actions, with no guarantee of justice. We have nothing to gain from it but the freedom of releasing ourselves from the shackles of silence. When you report is a personal choice not an agenda. Whether you report your rape or decide not to does not take away the truth of what you survived. If you’re reading this and have been triggered by the barrage of coverage on a subject you are still hunting down your own peace for, I’m right there with you. So many other survivors are right there with you, struggling with the same inner turmoil. It may feel like I’m the only one experiencing this but I know I’m not alone in this and neither are you. When tears well in your eyes as you hear another headline, they fall down my cheeks too. I’ll take that hurt and use it to speak up for myself and anyone else that is still silenced. As survivors we are many things; strong, fearless, heroic. But never alone.

Lesley Nord

Strategies I Use When My Illness Feels Like a Waiting Game

Most people who go to the doctor wait for results. Often the outcome of the results is not is critical to them and they are expecting normal outcomes. But for those of us with chronic illnesses, each trip to the doctor that requires tests and a wait for results can be filled with anxiety. Eight years ago I was diagnosed with a pituitary adenoma. In two days, I underwent five MRIs, multiple blood tests, saw my primary care physician, an endocrinologist, and a neurologist. My world changed after that week. I had a slow growing, benign tumor that was currently inactive. (Inactive means that it was not affecting my other hormone production at this time. The pituitary runs all the hormones in the body.) Now my life was divided into six month intervals of blood testing, then I wait two weeks for results. Each year I had an MRI. It seemed like I was always waiting to be tested or waiting for results. I was not really living. Then I made a decision. I would not let my health rule my life. I would not think about my tumor until it was time to be tested and for the actual two week waiting period for results. During that time and that time only, I would worry as much as I felt necessary and utilize the support of family and friends. The moment I made this decision, pushed my worries away, and focused on living my life and my attitude improved. I felt happier. I chose to do things with friends. I exercised more. I looked forward and felt I had a future. Was this strategy permanent? It worked very well until the day my results came back active. I have to wait six weeks to repeat the test and see if the results still show that the results are that my tumor is active and affecting my hormones. Then decisions will be made about treatment, which is usually brain surgery. The waiting game is on. I am having a tough time but am focusing on how to cope with this.  My husband is unable to face uncertainty and cannot talk about it. On the other hand, I am a planner. I want to talk about every option under the sun that could happen and how to handle it. To deal with this six weeks, I am turning to my mom, best friends, and close Facebook friends to chat, to share feelings, to discuss options, and to discuss potential plans for various outcomes and seek information. It helps me to deal with the feeling of being “not in control of my life” to try to control some parts of it and to vent. The waiting game is truly difficult. My first strategy is to live life fully and ignore the issue until the time of testing. My second strategy, given a positive test result that must be confirmed, since I personally cannot ignore it, is to plan for as many contingencies as possible to feel in control of my life and to gather support from family and friends. Hopefully these are helpful to others facing similar “waiting games.” Getty Image by tommaso79

Lesley Nord

Why I Fear Losing Insurance as Someone With Pre-existing Conditions

I am 53. I have multiple pre-existing conditions. I am disabled. I depend on my health insurance, my medical team, my medication and medical devices/tools to manage my life. Without them, I would not function, would be severely mentally ill, could not hear, and my pituitary adenoma (brain tumor) would not be managed. Healthcare is very important to me, as it is to many other people. I currently pay $345 per month for my healthcare premium and it is one of my biggest budget expenses. In addition, I have office co-pays, lab co-pays, and prescription co-pays to maintain my health which cost close to $200 per month. If I am sick or have an injury, my health expenses rise. My husband’s insurance premiums are paid through his work. That is a blessing. But he has had nine surgeries in the past 11 years. This past year he had an issue with his thyroid, which lead to afib and congestive heart failure. The hospital bills, doctor bills, prescriptions, and ongoing care are very expensive. But we have “good insurance” right now and we are grateful that we can manage our health issues. Unfortunately this may not be the case for us much longer. In a case argued early June, Texas vs. the federal Department of Health and Human Services, the Trump Administration refused to defend the remaining provisions of the Affordable Care Act (ACA). Thus many other provisions, several of which pertain to my age group, could be thrown out. These include premium limits for ages 50-64, minimum benefit requirements, and a requirement that bans insurance companies rejecting people with pre-existing conditions. I cried and cried as I realized what this decision means to me personally. I have multiple pre-existing conditions, so “good” companies with limits on health care premiums for my age group no longer have to maintain those limits. They can increase limits based on age. So younger, healthier people may pay much less for conventional ACA health insurance than those like me in an older, riskier group. How much more? There is no cap on the limit. In addition another problem rears its ugly head. Pre-existing conditions may be denied. The older you get, the more likely you are to have a pre-existing condition. I reviewed a list of pre-existing conditions including but not limited to bipolar disorder, cancer, diabetes, MS, pregnancy and sleep apnea. What is left for people like me ages 50-64, with multiple pre-existing conditions and living on a fixed income? President Trump extols the wonders of association health plans (AHPs). He claims these low cost health plans will accept anyone, even those with pre-existing conditions. It sounds wonderful, doesn’t it? What is not explained about AHPs is that they do not have to provide minimum medical benefits or cover pre-existing conditions. What does that translate to in plain English? AHPS can choose not to cover medications, hospitalizations, mental health care or pregnancy. They can exclude whatever they choose because there are no minimum requirements for healthcare. Add to that the exclusion of pre-existing conditions because no minimum benefits are required, and many will choose not to purchase an AHP plan. Essentially many people in the 50-64 age group and many people with pre-existing conditions will be without medical care. There will be no viable options for them. I will potentially be one of these people without a health care plan, attempting to meet my healthcare needs out of pocket, not getting care, or using creative methods like participating in studies or being a guinea pig for an intern — if I can find such possibilities. I am uncertain what my future holds after this year. I currently have insurance, but that may change in 2019. My tears flowed as I wrote this, not just for me but for friends, students and all the people it may affect. I looked at my medicine box and wondered if next year I would be blessed to have the medications that keep me healthy and stable. My husband assures me of two things: we will find a way through this, and we will vote to make this better in the coming election. All I can do is raise awareness and shed tears.

Lesley Nord

Why Fake Service Dogs Insult People With Disabilities

My supervisor was sharing how much she enjoyed her new home which was in my old neighborhood. She asked if I was familiar with the church three blocks down. I replied that I had attended the church with my husband and service dog. Excitedly, she inquired if I had attended any of the baseball games. I laughed and reminded her that we are a football family. She replied that she wanted to take her pet dog, Molly, to the games but would have to sneak her in because she saw a sign that said “Service dogs only, no pets.” My supervisor joked and said she thought Molly could behave well enough because she would just sleep. I was shocked. We have had many conversations about my service dog, the ADA (Americans With Disabilities Act), Kentucky law, and “fake service dogs.”  I was so upset I was speechless.  She changed the topic and continued the conversation, but this is what I wanted to share with her: Dear Linda (name changed), When you brought up sneaking Molly into the church ball games as a service dog, I was really disappointed.  We have had many conversations about service dogs, people with disabilities, and the laws governing their rights and responsibilities.  I believed you were educated and ethical. I will try to put it very plainly for you. To have a service dog, the handler must have a disability. Would you like my disabilities? Would you like disabling panic attacks and depression? Would you like to be hearing impaired?  Would you like to be hypoglycemic and unaware of the symptoms? Because I am disabled, my service dog performs tasks to alleviate my disabilities. You know this. When you sneak a pet in somewhere as a service dog, you are faking a disability, not just claiming the dog is a service dog.  In a way, by sneaking around, you make fun of those of us with disabilities and belittle our illnesses or conditions. That is not a kind thing to do. Perhaps you have not really thought through this action and its consequences. I hope you are merely being thoughtless and not truly unkind and unethical. People with disabilities don’t take our service dogs everywhere to have “fun” or be “cool.” Service dogs are medical tools that alleviate symptoms of our disabilities, and they are living breathing beings with the brains of toddlers that require constant care and attention. They are expensive. They draw attention to the fact that you are disabled. Hopefully you realize now that your comment and your idea to pretend to be disabled and pass Molly off as a service dog was deeply hurtful. People with disabilities deserve respect and obeying that sign is one way of showing respect.

Lesley Nord

Getting a New Hearing Loss Diagnosis

Today I saw an audiologist and an ENT specialist.  It was an appointment I feared and desired.  I feared the outcome and confirmation of what I suspected about my hearing. I desired help and wanted to hear better if possible, but was struggling to admit there was a problem. The audiologist introduced herself and gave me some instructions.  I had to ask her to repeat parts of it, even though she was facing me and we were in a quiet environment. I sat in the chair and she started the test by reading a list of words for me to repeat. Then I raised my finger when I heard a tone. The audiologist returned to the room and showed me a graph that indicated I had moderate hearing loss in both ears, and it was worse at speech level sounds. Next I was told I would meet with the ENT specialist. I had a long wait for the doctor. It gave me time to think. I thought back across the past year and what brought me to this appointment. At first, I was simply turning the TV volume up. I did not hear my husband call me from another room. I started missing words in sentences when people were not facing me. Then if they faced away from me, I could not hear them at all. I stopped using the telephone and had all calls directed to my husband. I began emailing my parents and texting friends.  At work during lunch, I slowly stopped participating in the group conversation because I could not follow it. I had started lip reading to compensate and could not switch from person to person quickly enough. I became isolated.  I could only hold one-on-one conversations in low distraction environments. Fire alarms at school did not bother me. They were not loud. My hearing or lack thereof caused disagreements with my husband, who could not always remember that my situation had changed. And when my husband needed me for a medical emergency and called my name, I did not hear him. He called my service dog’s name, who began nudging me and lead me to him. I realized I needed to take action. All these issues were crystal clear after the doctor examined me. The doctor explained that my ears had no problems that were causing the hearing loss.  It was probably due to loud noise or aging. He asked if I had been exposed to any loud noise for extended periods of time.  I could only think of one job I held for three summers where I was around loud machinery and we had no ear protection. In any case, the doctor explained I needed hearing aids in order to be able to understand conversations, speak on the telephone, hear TV and movies at a typical volume and hear alerts like the microwave, washing machine, telephone and alarms when they go off. I was not surprised at the news, but yet I was not ready for it. I was handed information on hearing loss and hearing aids and an appointment was set up with the audiologist to fit me for hearing aids.  I left the doctor’s office in a daze. I was not ready to process this information. I walked to my car, got in and texted my husband, “I need hearing aids. Appointment in 10 days. Will you still  love me?” He immediately responded, “I love you now. I might love you better if you can hear me. Just kidding!” I sat thinking. How much was I missing? Did I know? Did my friends think I was simply ignoring them at times, or not engaging in the group conversation when the truth was I could not hear and could not participate? Maybe this could set me free from being so isolated. The little voice that had been saying “I don’t want another label or disability” was quickly being silenced. I went to school the next day and spoke to the teacher of our hard of hearing students. I wanted to learn about hearing aids and batteries.  She was helpful and answered some questions, but suggested I speak with another teacher who was recently fitted with hearing aids. Erin (name changed) was willing and kind enough to speak with me. She explained her journey to me.  It was similar to mine.  I was able to ask for tips about my next appointment. What had me excited and a little scared is her description of wearing hearing aids for the first time: “Loud, overwhelming. You want to put your hands over your ears. Things will startle you. You will be amazed by what you missed.  You hear birds sing. You hear sentences. You hear footsteps. You hear the wind. You hear raindrops.” When she spoke, tears filled my ears and my throat choked up.  I did not realize how much I had been missing. My world had been silent for so long. This diagnosis is a blessing! I cannot wait for my hearing aids and to be fully participating in the hearing world again.

Lesley Nord

When I Faced a Doctor's Discrimination Because of My Disabilities

Seven years ago I filed for disability and received it. In many aspects my life continues on as I would have expected. I have my family and friends and I have hobbies. I volunteer. I no longer work, which was a major adjustment. I have many more medical appointments.  I take lots of medication. My service dog is my lifeline. There are some activities in which I no longer participate. But I have never felt the shame, hurt and frustration that discrimination arising from disability causes until three weeks ago.  And it came from a very unexpected source. For approximately a year, I had been feeling progressively more tired. Usually an I am active person exercising 30 minutes and walking three miles a day. Then I  switched to Hot Yoga three times a week with Cardio three times a week and walking, and eventually decreased to very short daily walk walks. The fatigue stole my ability to exercise. I was constantly exhausted and began napping after volunteering but even sleeping was not ameliorating my fatigue. I checked my eating with a trainer and nutritionist and there were no issues. No home remedies were helping. Depression could explain part of my fatigue, so I worked with my psychiatrist. There was an element of depression that could account for some of my fatigue and we spent four months resolving that issue with medication and therapy. But the fatigue remained. Emotionally I was feeling happy with my life but I was concerned about the physical fatigue because it was limiting my activities with family and friends. My energy for volunteering was lacking and I was attending fewer days per week. My psychiatrist and I discussed the next steps to resolving the fatigue dilemma. I had an endocrinologist appointment coming up that could rule out any effects from a pituitary adenoma.  If there were no issues at that appointment, I would return to my psychiatrist for a recheck of my meds, discuss my fatigue,  check my on my emotional state / lack of depression and then make an appointment with my PCP. My endocrinologist found no extraordinary issues with my pituitary adenoma, but did find a vitamin D deficiency and started me on Vitamin D. I met with my psychiatrist a month later and she suggested I make an appointment with my PCP. Both of us felt like I had done everything to rule out all other conditions and not waste my PCP’s time. After all, I had given a virus time to get better, I had seen my specialists and followed their plans and been cleared by them. It was time to deal with this fatigue. I called my PCP that afternoon to make an appointment. I felt silly when they asked, “What is this appointment for?” and I replied, “Fatigue.” My PCP was not available for a month, so I took the first available appointment with a doctor  two days later. I was really happy to be seen so quickly even though it meant leaving volunteering early. I was nervous about not seeing “my” PCP who had been my husband’s doctor for many years and then became mine as well. I really like and trusted him. But I was willing to give a person from his office a chance. After all, they worked with my doctor. My first impression was positive. The doctor was personable, made eye contact, asked questions to get to know me and wanted to know about Sam, my service dog. I explained I had been fatigued for about a year. I had stopped exercising six months ago, stopped walking about three months ago and now was having trouble keeping my volunteering schedule despite naps. I shared that sleep was not helping and I woke up tired. I asked her if she could help me because I wanted to get back to exercising and stop napping and waking up tired. This MD gave me hope when she replied, “We will run some basic tests and if nothing shows up, we will go with some more tests until we get results and help you.” I wanted her to know that I had done my part and had worked with my specialists. I explained my endocrinologist only found a Vitamin D deficiency. I shared with this doctor that I met with my psychiatrist the day before and my psychiatrist agreed that I was not depressed, that my meds were working, and that I should follow through with the plan to see my PCP about the fatigue.  She immediately asked for my medication list after hearing about the psychiatrist. Her demeanor changed. It seemed to be less inviting. She listed several tests- anemia, B12 and two others and said she would call with the results by Monday or Tuesday. Then she ended the appointment. I felt confused as I left the appointment. Was I being overly sensitive? Should I not have mentioned going to my other doctors first to rule things out? Was I wrong to have dealt with my depression? I knew I had to declare my medications. Something was awry, but I could not put my finger on it. Monday came and there was no call from the doctor.  Tuesday came and I waited until 3:00 pm. I knew it would be difficult to reach the doctor herself, so I called medical records to get the results. I was a ball of nerves as I was put on hold. Then a nurse came on the line and got my information. She said, “I will read you the letter the doctor is sending you.” My stomach tightened and a funny feeling took over me. Something was wrong, very wrong. The nurse’s words confirmed it. “The lab tests are in the normal range. I recommend you see your psychiatrist for depression. Thank you, Dr. X.” Shaking with anger and dismay, yet trying to maintain the appropriate required endings to the conversation, I mumbled, “Thank you. Goodbye,” as I disconnected the call and burst into tears of shame and frustration.  This doctor who had told me she would help me had decided I was merely a “psych patient” whose problems were all in her head, and chose not to help me. I felt the heavy burden of discrimination for the first time. It was shameful and numbing in turns. I was uncertain about what my next step should be because emotionally I was devastated. I was ashamed and did not want to seek advice from family or friends. Then I was numb, and just could not consider even thinking about the situation. I shed many tears of sadness, anger and frustration at various points during that afternoon and evening. I finally texted my husband and my two closest friends explaining what had transpired. All were aware of my fatigue, my previous appointments with the psychiatrist, endocrinologist and my high expectations for finding a cause for my issue after meeting this seemingly supportive doctor. I texted them the contents of the letter and my short conversation with the nurse. My husband immediately responded that I needed to “see a real doctor and to make a new appointment!” One friend told me “It’s not in your head. I can see the changes and you are not depressed. Find a new doctor.” My second friend put it all into perspective when she said, “You are ill. That is discrimination and you know it. You can fight it. Get a new doctor, get well and deal with it!” Feeling supported and stronger with the backing of my friends and husband, I picked up my phone and called my doctor’s office. I requested an appointment with my PCP. It was a miracle! He had an opening the next day. I cleared my schedule and took it. I ended the phone call and was immediately anxious. Would my doctor be influenced by the other doctor’s notes? Would I face more discrimination or would I see the wonderful doctor I knew and liked? I decided to be positive and try to get some sleep. The next day I was nervous as I drove to the appointment. My husband encouraged me to remain calm and to trust our doctor. The check in went smoothly as did the meeting with the nurse. Finally my doctor came in. He read over my chart and asked what brought me in. I replied, “I am completely exhausted. I am not depressed. My psychiatrist has ruled that out. My endo has ruled out problems with my pituitary adenoma. I saw an MD in your office last week who said she would help me. She ran a couple of tests that came back fine. She said to see my psychiatrist. That is not the problem. I would like your help. This has been going on for a year. You know I come in only when things are a problem. I miss my exercise routine.” My PCP listened carefully. He said, “I will check your vital signs, run some additional blood tests but I think you might have sleep apnea. Has your husband told you that you snore?” I told him “yes,” and I was referred for a sleep study. I met with that doctor, who asked many questions, determined that I was a high risk for sleep apnea and scheduled the sleep study. The sleep study was done at a hospital. I was wired to an EEG, an EKG, a snore microphone, a band to measure my breathing, and two sensors to measure restless leg syndrome as well as oxygen to my nose. It was intense.  I also had to sleep on my back which was uncomfortable since I only sleep on my side.  I was worried there would be no results but I went to sleep quickly as I was very tired. I awoke to a nurse telling me that I had met the criteria and I needed to be placed on a CPAP machine because I was not breathing adequately while I was sleeping. I looked at my watch. It was only 12:46 A.M. Finally! Results! It was not easy facing the discrimination of the first doctor. But with the support of family and friends and knowing that I deserved answers, I persevered. I sought a second opinion and demonstrated that I had done the groundwork, I was not depressed and like any patient, I deserved treatment. In sharing all this, I hope anyone who faces similar obstacles will be empowered to take charge and move forward. We want to hear your story. Become a Mighty contributor here . Thinkstock photo by ESS Graphics.

Lesley Nord

When I Faced a Doctor's Discrimination Because of My Disabilities

Seven years ago I filed for disability and received it. In many aspects my life continues on as I would have expected. I have my family and friends and I have hobbies. I volunteer. I no longer work, which was a major adjustment. I have many more medical appointments.  I take lots of medication. My service dog is my lifeline. There are some activities in which I no longer participate. But I have never felt the shame, hurt and frustration that discrimination arising from disability causes until three weeks ago.  And it came from a very unexpected source. For approximately a year, I had been feeling progressively more tired. Usually an I am active person exercising 30 minutes and walking three miles a day. Then I  switched to Hot Yoga three times a week with Cardio three times a week and walking, and eventually decreased to very short daily walk walks. The fatigue stole my ability to exercise. I was constantly exhausted and began napping after volunteering but even sleeping was not ameliorating my fatigue. I checked my eating with a trainer and nutritionist and there were no issues. No home remedies were helping. Depression could explain part of my fatigue, so I worked with my psychiatrist. There was an element of depression that could account for some of my fatigue and we spent four months resolving that issue with medication and therapy. But the fatigue remained. Emotionally I was feeling happy with my life but I was concerned about the physical fatigue because it was limiting my activities with family and friends. My energy for volunteering was lacking and I was attending fewer days per week. My psychiatrist and I discussed the next steps to resolving the fatigue dilemma. I had an endocrinologist appointment coming up that could rule out any effects from a pituitary adenoma.  If there were no issues at that appointment, I would return to my psychiatrist for a recheck of my meds, discuss my fatigue,  check my on my emotional state / lack of depression and then make an appointment with my PCP. My endocrinologist found no extraordinary issues with my pituitary adenoma, but did find a vitamin D deficiency and started me on Vitamin D. I met with my psychiatrist a month later and she suggested I make an appointment with my PCP. Both of us felt like I had done everything to rule out all other conditions and not waste my PCP’s time. After all, I had given a virus time to get better, I had seen my specialists and followed their plans and been cleared by them. It was time to deal with this fatigue. I called my PCP that afternoon to make an appointment. I felt silly when they asked, “What is this appointment for?” and I replied, “Fatigue.” My PCP was not available for a month, so I took the first available appointment with a doctor  two days later. I was really happy to be seen so quickly even though it meant leaving volunteering early. I was nervous about not seeing “my” PCP who had been my husband’s doctor for many years and then became mine as well. I really like and trusted him. But I was willing to give a person from his office a chance. After all, they worked with my doctor. My first impression was positive. The doctor was personable, made eye contact, asked questions to get to know me and wanted to know about Sam, my service dog. I explained I had been fatigued for about a year. I had stopped exercising six months ago, stopped walking about three months ago and now was having trouble keeping my volunteering schedule despite naps. I shared that sleep was not helping and I woke up tired. I asked her if she could help me because I wanted to get back to exercising and stop napping and waking up tired. This MD gave me hope when she replied, “We will run some basic tests and if nothing shows up, we will go with some more tests until we get results and help you.” I wanted her to know that I had done my part and had worked with my specialists. I explained my endocrinologist only found a Vitamin D deficiency. I shared with this doctor that I met with my psychiatrist the day before and my psychiatrist agreed that I was not depressed, that my meds were working, and that I should follow through with the plan to see my PCP about the fatigue.  She immediately asked for my medication list after hearing about the psychiatrist. Her demeanor changed. It seemed to be less inviting. She listed several tests- anemia, B12 and two others and said she would call with the results by Monday or Tuesday. Then she ended the appointment. I felt confused as I left the appointment. Was I being overly sensitive? Should I not have mentioned going to my other doctors first to rule things out? Was I wrong to have dealt with my depression? I knew I had to declare my medications. Something was awry, but I could not put my finger on it. Monday came and there was no call from the doctor.  Tuesday came and I waited until 3:00 pm. I knew it would be difficult to reach the doctor herself, so I called medical records to get the results. I was a ball of nerves as I was put on hold. Then a nurse came on the line and got my information. She said, “I will read you the letter the doctor is sending you.” My stomach tightened and a funny feeling took over me. Something was wrong, very wrong. The nurse’s words confirmed it. “The lab tests are in the normal range. I recommend you see your psychiatrist for depression. Thank you, Dr. X.” Shaking with anger and dismay, yet trying to maintain the appropriate required endings to the conversation, I mumbled, “Thank you. Goodbye,” as I disconnected the call and burst into tears of shame and frustration.  This doctor who had told me she would help me had decided I was merely a “psych patient” whose problems were all in her head, and chose not to help me. I felt the heavy burden of discrimination for the first time. It was shameful and numbing in turns. I was uncertain about what my next step should be because emotionally I was devastated. I was ashamed and did not want to seek advice from family or friends. Then I was numb, and just could not consider even thinking about the situation. I shed many tears of sadness, anger and frustration at various points during that afternoon and evening. I finally texted my husband and my two closest friends explaining what had transpired. All were aware of my fatigue, my previous appointments with the psychiatrist, endocrinologist and my high expectations for finding a cause for my issue after meeting this seemingly supportive doctor. I texted them the contents of the letter and my short conversation with the nurse. My husband immediately responded that I needed to “see a real doctor and to make a new appointment!” One friend told me “It’s not in your head. I can see the changes and you are not depressed. Find a new doctor.” My second friend put it all into perspective when she said, “You are ill. That is discrimination and you know it. You can fight it. Get a new doctor, get well and deal with it!” Feeling supported and stronger with the backing of my friends and husband, I picked up my phone and called my doctor’s office. I requested an appointment with my PCP. It was a miracle! He had an opening the next day. I cleared my schedule and took it. I ended the phone call and was immediately anxious. Would my doctor be influenced by the other doctor’s notes? Would I face more discrimination or would I see the wonderful doctor I knew and liked? I decided to be positive and try to get some sleep. The next day I was nervous as I drove to the appointment. My husband encouraged me to remain calm and to trust our doctor. The check in went smoothly as did the meeting with the nurse. Finally my doctor came in. He read over my chart and asked what brought me in. I replied, “I am completely exhausted. I am not depressed. My psychiatrist has ruled that out. My endo has ruled out problems with my pituitary adenoma. I saw an MD in your office last week who said she would help me. She ran a couple of tests that came back fine. She said to see my psychiatrist. That is not the problem. I would like your help. This has been going on for a year. You know I come in only when things are a problem. I miss my exercise routine.” My PCP listened carefully. He said, “I will check your vital signs, run some additional blood tests but I think you might have sleep apnea. Has your husband told you that you snore?” I told him “yes,” and I was referred for a sleep study. I met with that doctor, who asked many questions, determined that I was a high risk for sleep apnea and scheduled the sleep study. The sleep study was done at a hospital. I was wired to an EEG, an EKG, a snore microphone, a band to measure my breathing, and two sensors to measure restless leg syndrome as well as oxygen to my nose. It was intense.  I also had to sleep on my back which was uncomfortable since I only sleep on my side.  I was worried there would be no results but I went to sleep quickly as I was very tired. I awoke to a nurse telling me that I had met the criteria and I needed to be placed on a CPAP machine because I was not breathing adequately while I was sleeping. I looked at my watch. It was only 12:46 A.M. Finally! Results! It was not easy facing the discrimination of the first doctor. But with the support of family and friends and knowing that I deserved answers, I persevered. I sought a second opinion and demonstrated that I had done the groundwork, I was not depressed and like any patient, I deserved treatment. In sharing all this, I hope anyone who faces similar obstacles will be empowered to take charge and move forward. We want to hear your story. Become a Mighty contributor here . Thinkstock photo by ESS Graphics.