To the Person With Chronic Illness Who Feels Like You’re Falling Behind

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I’ve really struggled for the last few years with feelings of guilt and inadequacy. We live in a world that puts a heavy emphasis on health equaling worth or value. If you’re not healthy, you’re not valuable to society and you’re to be ignored or whispered about. At least, this feels true in the U.S.

The stories of disabled people only make the news when it involves some abled person who is perceived as doing something kind for a disabled person, or some disabled person “overcoming” their disability in some way (according to abled people). It seems people don’t like talking about disability much. Many people assume disabled people are lazy, depressed or faking. Illness makes people incredibly uncomfortable, especially if it isn’t physically obvious and you somehow break the stereotype of “disabled.”

I’ve internalized a lot of this. I’m really harsh on myself, even though logically, I’ve done really well considering my circumstances.

It is graduation season again, so this has dredged up a lot of feelings. There has been nothing I’ve wanted so much than to receive my degree and get into my desired career. I see a lot of friends moving on to graduate school or entering their career fields. And I feel so f*cking behind (even though I’m actually only a semester or so behind).

The rational part of my brain keeps reassuring me it’s OK. It’s OK that I’m not done yet. I mean, after all, during my freshmen year I underwent chemotherapy while working full-time and attending school full-time. It’s OK because I have moved twice during my time attending a university — I moved from Texas to Alaska and then from Alaska to Virginia. It’s OK because I’ve switched between three universities. It’s OK because I’ve been fighting chronic illness for about 9 years now. It’s OK because I’ve managed a solid 3.7 GPA during my time at a university. It’s OK because this semester I underwent a complicated brain and neck surgery and still pulled a 4.0 GPA for the term. It’s OK because I was doing schoolwork two days after my brain surgery.

It’s OK and I shouldn’t compare myself. It’s OK because grades don’t matter that much. Still, here I am weighing them as if they should count for something in my existential crisis. And yet, the emotional side of my brain constantly fights these feelings of worthlessness that have been instilled in me from an early age, from my father and from society as a whole who I believe, in general, doesn’t like to talk about disabled people as successful, intelligent and complicated individuals.

And I just want so badly to be able to do something with myself. My husband told me if my health prevented me from using my degree, it would be OK. I’d get my debt forgiven and we’d find a way to make it all work. But I don’t want that. I want to contribute to society in a meaningful way. If money were no object, I would go into research after getting my doctorate. But money is an object, and it is a barrier for me.

It feels so stupid. I can comfort a friend and reassure them to the ends of the earth. But for the life of me, I cannot treat myself with that same empathy and reassurance. I just have this crushing anxiety that I will never be anything or anyone. It’s all I want in this life. I don’t care much about money or things. I just want to do something valuable with my time. Whether it’s research in neuroscience, or therapy for sick people like me, or advocacy for chronically ill and chronic pain patients… I just need something. I need fulfillment — a reason to wake up for myself, not for the people I love.

For peace of mind and heart, I want to share this short letter. This letter is to myself, in the future, and it is to any fellow human with disabilities, illness and pain.

Dear friend,

It’s OK to grieve your life. It’s OK to be sad, frustrated and tired. It’s OK to give up for a day, maybe two days, maybe a week. This life isn’t easy for people like us, and that is OK. I wish I could tell myself this. Some days I believe it and some days I don’t, and I know that’s OK, too.

But there is something out there for you. That “something” out there for you, for your fulfillment and for your life — it may come at a time when you least expect it. It may not be what you had originally desired and hoped for.

It doesn’t really get better — I don’t think that is the nature of chronic illness. But it gets easier to live with. We get stronger and more adapted to coping.

So when you’re ready to get it together, I’ll be here and those people who love you will be here for you, too.

With love,
A fellow warrior

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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To My Friends Who Stick Up for My Chronic Illnesses

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As a 21-year old attempting to be a social butterfly even with chronic illnesses, friendships have been the sustaining factor in my sanity. These extraordinary friendships look past my imperfections, seeing me as any other normal 20-something. When I am with you, I forget how different we actually are since I’m living with invisible illnesses: Ehlers-Danlos syndrome, Sjogrens syndrome and gastroparesis. Without the encouragement and unconditional love, I would not be where I am today (I’d probably be a hermit).

Thank you for suggesting we take the elevator or drive without me having to say I can’t do the stairs or walk. I think it is automatic for you at this point, but internally, I am beaming with love and gratefulness that you are ever-conscious of my pains and weaknesses. You know I would try slowly to go up the stairs and not complain, but only you can see through the fake smile.

Thank you for always ensuring I have my medical alert bracelet on my wrist and even going to get it fixed with me when it breaks. It is unbelievably comforting to know that even when you’re not around to be my “medical advocate,” you care that I have another option to alert strangers.

Thank you for reminding me I am always beautiful and whole and repeating that to others who see me differently. Even though I have a feeding tube, a giant midline scar and a gastric pacemaker, I deserve people to treat me with the utmost respect and not see me as a burden or damaged. It’s not something I discuss with you often, but you have given me confidence and self-esteem when I lost myself in my pain.

Thank you for telling off any stranger who has stared or questioned my scars and disabilities. My favorite story comes from a cab ride after someone elbowed me in my pacemaker by accident. Obviously, my abdomen was in pain and I was extremely nauseous, which I mentioned to you in the car. Well, the cab driver pulled over in a random neighborhood and told us we had to get out because I was sick. But you wouldn’t have him treating me with “discrimination,” as you said, so you called the police. Even though we still ended up on the side of the street without a ride, you and I laughed about the circumstance for weeks.

That is what makes a friendship special: accepting each other for who we are – me as a different, disabled girl and you standing by me when the world throws curve balls.

I have the greatest support system right there to defend me and be by my side when I don’t have the guts or strength, so massive thanks to my girls out there. With that, I want to apologize. I can’t imagine what it’s like seeing me constantly throwing up, in pain, in the hospital and struggling daily. I do not think I could ever handle watching any of you suffer without feeling extreme emotional pain and distress, and it is painful to think about.

Just know that without you, I wouldn’t be the fighter I am today, and I won’t allow you to lose me without an enormous fight. You are all my blessings.

The Mighty is asking its readers the following: Write a thank you letter to someone you realize you don’t thank enough. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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10 Things I Wish I Knew as a Teenager After My Diagnosis

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High school is generally depicted as late study nights, an abundance of friends and incessant fun during the years that determine life success. You can imagine my disappointment when pain and lethargy took over my days, and the closest thing I had to a friend is my doctor joking that my pallid complexion is in a competition with the pale, lifeless walls surrounding the hospital room.

It was the year before high school when I was diagnosed with Ehlers-Danlos syndrome (EDS), as well as its comorbid conditions, mast cell disease and postural orthostatic tachycardia syndrome, or POTS for short. Receiving a diagnosis for the chronic symptoms plaguing my body was a terrifying time, undoubtedly. Despite the diagnosis, all hope for my teenage years was not lost; however, it definitely took years to find my way.

Here are 10 things I wish I knew as a young teenager after being diagnosed with a chronic disease:

1. You are not alone.

I spent numerous days staring at the spinning hospital ceiling, feeling as if not a soul understood what I am going through. It may seem like there’s nobody else in the world going through similar experiences, but that’s not the case! Don’t be afraid to reach out to others. Use a social media platform or join a local support group to meet other young people dealing with illness.

2. Understand friends come and go.

The teenage years are inevitably a confusing time period in an adolescent’s life. During these years, most are stumbling along, attempting to find their way as they begin maturing. Throwing illness into the mix can make for tricky friendships. When I was diagnosed at 13, not many of my peers could grasp such a complex illness. The presence of appointments, medications and interventions like feeding tubes scared them. They simply don’t know what to say, so the easiest thing they can do is avoid the situation entirely.

3. Be your own advocate.

This speaks for itself. When having a chronic condition, you’re bound to encounter some less-than-helpful medical professionals and family or friends. I know I have. It’s imperative to stand up for yourself and advocate for the needs beneficial to you and your body.

4. It’s OK if you temporarily lose sight of yourself.

Like I mentioned above, the teenage years are a time for developing character and everything that makes you, well, you. Illness adds to the confusion because it tends to come with the sacrifice of prior hobbies, relationships and sometimes even altered physical appearance. I have lost myself numerous times throughout my health journey. Don’t worry — you’ll find your way.

5. Don’t mind when people stare.

I am no stranger to medical accessories, as I like to call them. Whether it’s feeding tubes, central lines, braces or something else, people will stare because those things make us different. Keep in mind that the vast majority don’t mean any harm and are genuinely curious because we stand out. Although you may feel uncomfortable, try not to take offense. You owe an explanation to no one.

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6. If all you can do is survive, that’s an accomplishment.

We all have those days when illness prevents anything from getting accomplished. That’s OK. If tomorrow comes and you still cannot do anything but stay in the comfort of your own bed, that’s OK, too.

7. Realize that doctors are human.

Behind the professional white coat and fancy prescription pad, doctors are only human. They are not God. They make mistakes like we do, but do not be hesitant to call them out on it. The sooner you accept that they are human, the easier life will become.

8. Days will come when you are bitter.

Bitterness kind of comes with the territory of being chronically ill. We all endure it. Not that you have to mope all day, but there will be days when observing peers do everything you are too sick to do will take its toll.

9. Don’t abandon all hobbies and passions.

Before my illness took a turn for the worst, I was a softball player. I have also lost countless other hobbies and passions because of my health. It’s important to find new hobbies. Focus on what you can do, rather than everything you can’t. It helps. I promise. Read a good book, take up sewing, stand firm in your faith — the possibilities are endless!

10. Mourn the past, but don’t stay there.

Having a chronic condition is similar to repetitively enduring the stages of grief. As a newly diagnosed teen, I mourned my previously busy life. It’s fine to miss the past, especially when the future seems so uncertain. Keep in mind that thinking of the past will not bring it back. There are brighter days ahead.

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Why I’m Celebrating My Incurable Diagnosis

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“Are you diabetic?”

I’ve heard it before. I’ve been hearing it for years, in fact, but with recent ER visits for an infection around my central line, days of IV antibiotics and the re-assessment that followed, I heard it five times from five separate doctors all within one week. Gastroparesis and autonomic dysfunction are common comorbidities in diabetes, so after all these years, I now fully expect to be asked this question.

During that same week, a triage nurse commented on how I was so young to have so many random health problems. A nurse in interventional radiology asked me what the plan was for getting me better and back to normal life. And an ER nurse’s eyes welled up with tears after she took my lengthy medical history and then realized we were the same age.

Again, these are all really common and understandable responses. Health care workers are more accustomed to seeing complicated chronic conditions in older patients, not patients in their 20s like me. It probably doesn’t help that despite having recently turned 24, I’m often mistaken to be 15 or 16 years old!

All of these reactions are usually followed up the same way. Why? Why do you have this? Why is this happening to you? Why aren’t you getting better? Why isn’t your age allowing you to just bounce back?

For six years I haven’t had an answer, but now I have one.

Catherine Richardson the mighty.3-001

I have Ehlers-Danlos syndrome (EDS). I have an incurable connective tissue disorder that affects my joints, blood vessels and organs. I’m not going to magically get better, and it’s possible that things might get worse.

And I’m celebrating.

To be clear, I’m not celebrating the incurable-not-getting-better-but-maybe-getting-worse part. That part is as overwhelming and frustrating as it sounds.

But that part really isn’t anything new. Sure, we didn’t know what was causing all of my problems, but it was well established that my illnesses were chronic. It was understood there would be ups and downs, highs and lows and that I would be tackling health struggles for the rest of my life. And that hasn’t changed.

Here’s what has changed.

The next time I meet a new doctor and they ask me why all of this is happening to me, I will have an answer. The next time I wonder if my illness is something I brought upon myself and could have prevented, I will know that’s not the case. And the next time I experience some bizarre new symptom and I want to pull my hair out wondering why my body is so strange, I’ll know that strange is just par for the course and it’s not just all in my head.

When I first learned about Ehlers-Danlos syndrome more than two years ago, I immediately thought, “I think I have that.” However, as many chronic illness patients know, most doctors don’t really appreciate it when we diagnose ourselves and then ask for the tests or referrals to confirm it. It took a lot of casual mentions, strategic asking of opinions, polite acceptance of brush-offs, insistent re-mentions and then, as always, months and months of waiting. Now that I have a diagnosis, I also have a reminder to trust my instincts and never stop advocating for myself.

This diagnosis brings a lot of peace of mind and a-ha moments. Now I know why I can’t eat and why my body sometimes forgets how to stand up, but there are so many other things about my life that all of a sudden make sense! Now I know why my dance teachers used to get after me for having ugly elbows, loosey-goosey shoulders and knees and ankles that didn’t line up properly. Now I know why I hold my pens and pencils differently. And now I know why my family used to give me strange looks when I couldn’t finish my steak because chewing was just too exhausting and painful. (Apparently, not everyone feels like their jaw is going to fall off while eating steak.) There’s a long list of little things that all of a sudden make a lot of sense since this very important piece has been added to the puzzle.

So no, I’m not happy about all of the challenges the future me has to deal with, but I am happy to have a better understanding of all of the challenges I’ve already faced.

I’m happy to have some answers.

I feel heard and I feel validated.

I feel empowered. And that is why I am celebrating. Ugly elbows and all!

Catherine Richardson the mighty.2-001

 Follow this journey on Finding My Miracle.

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How My Child Responded to Someone Saying She Looks 'Normal'

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My daughter is brilliant, amazing, beautiful, funny and has a laundry list of medical diagnoses. She has: intractable epilepsy, autism, Ehlers-Danlos syndrome, a feeding tube and developmental delays. She is 6 years old and has six 3-inch, three-ring binders with all her medical documentation set up for every specialist, social service provider and regular doctor.

My girl is sweet and charming and her smile is disarming. When meeting new people, she is either shy or boisterous (depending on her mood) and her disabilities are often invisible… at first. Inevitably, something happens that causes her daddy or me to share one or two of her special qualities. When the diagnosis is shared, we often are met with the phrase, “Wow, she looks so normal.”

I understand their misguided attempt to make me “feel better” by telling me how normal-looking my child is, but what should she look like? Would it be easier for people if all those with disabilities were colored purple? Or maybe had a star on their bellies like Dr. Seuss’s Sneetches? Why should my daughter’s lists of conditions make any difference in how you describe her? Because she has epilepsy, did her beautiful smile become somewhat tainted? Due to her autism, did her funny joke and belly laugh become warning signals?

And is there anyone anywhere who’s “normal”?

I have two older sons who are both brilliant and charming and wonderfully handsome, and I see both of them in my daughter’s eyes and smile. Are they somehow “less normal” for having my girl as their sister?

Yesterday, we were watching a parade. It happened to be my daughter’s first. At 6 years old, this was the first parade she was able to enjoy, and we were all basking in afterglow of catching candy and making it almost entirely through the parade without a meltdown or a seizure. A friend of a friend of a friend came over to tell me how normal my daughter looked and how they never would’ve known about her disabilities just by looking at her (patting me on the back as though congratulations were in order). As if on cue, my darling girl hoisted her shirt high over her belly and declared, “I am a shining star” (showing off her star-shaped tubie pad encircling her feeding tube).

My amazing, unique and fantastically wonderful, star-bellied Sneetch.

The Mighty is asking its readers the following: Describe a time you saw your disability, illness and/or disease through the eyes of someone else. If you’d like to participate, please send a blog post to [email protected]. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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I Wish I Opened Up to the Flight Attendant About My Invisible Illness

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Due to my chronic disabling condition, Ehlers-Danlos syndrome (EDS), I’m used to getting bad looks or comments from people who do not understand why someone who looks so fine can be this sick.

But this experience was something else… In a moment when I actually expected to be treated with respect and understanding, I was met with more ignorance than all the years before.

I am living with EDS and a very unstable cervical spine, which is a huge problem if you have to travel alone. Cervical instabilities can affect the whole body. In my case, I had a hard time with walking longer distances, blurred vision and numbness and weakness in my arms. I’m not allowed to lift anything, and I’m supposed to walk with caution.

All my diseases led to the decision that I needed to see some specialists in another country. I was more than scared to fly alone with a lot of luggage, but I was told by the airline I would get the help I need without any problem.

I’m not a person who lets anyone see how I feel. I used to hide my pain and problems behind a smile, and I try to be as mobile as I can. But this time it was different. This time I really had to take a helping hand if I wanted to get off this plane without being bedridden for the next few weeks. I couldn’t just push through my symptoms as I used to do before. I booked a wheelchair and told everyone I couldn’t lift my carry-on luggage.

As you can imagine, people looked confused, and sometimes I heard them whispering bad things when they saw me, a young woman in her 20s, get out of the wheelchair and walk to her seat after I was brought to the gate. A lot of people don’t understand you can still use your legs but need a wheelchair anyway. I know I shouldn’t feel embarrassed, but I always do. It’s hard for me because sometimes people make you believe you’re just lazy and actually don’t need this help.

At the gate, I wanted to make sure I was allowed to preboard and the crew knew I needed help to store my carry-on. I was told if I really need to preboard, that’s OK, and they could also check in my carry-on. I tried to explain it’s not possible because I had all my braces and medication in my carry-on in case I needed them during the flight. These items are expensive and I can’t lose them.

When the flight landed, I asked again if someone could assist me with my carry-on luggage and I, for the first time, experienced the ignorance of someone who was supposed to help without judging me. When I asked a crew member to support me and lift my luggage for me, she told me if I was not able to lift my luggage by myself, I should leave it at home the next time.

This one sentence made me not only sad, but it also left me feeling like I maybe don’t need the help. Maybe someone else is worse off than me and needs it more? Instead of telling her she’s not in a position to judge me, I left and carried my luggage alone.

One week after, my body still struggles with the consequences. I probably should stop pretending that I’m fine so everyone can see my pain. But that’s just not how or who I am.

I wish I’d told her that long-distance flights feels like torture to me, that all my joints hurt, that my legs went numb from sitting on the hard seats (even with my seat cushion), that I couldn’t sleep because I cannot allow my cervical spine to relax while I’m sitting upright. I wish she would’ve recognized my neck brace and that it’s there for a good reason. I wish she knew how scared I always am if I have to fly by myself.

I wish I’d just stop pretending I’m fine and tell people how I really feel. I wish I’d told her how hard it is with an invisible illness like Ehlers-Danlos syndrome.

Nobody should judge someone just because they look fine. They might be in a lot of pain or are just too proud to show their pain. Maybe the crew member was just having a bad day. Maybe she was hiding something, too, and I didn’t notice it. Maybe I should have asked her if she was OK.

The Mighty is asking the following: Describe a moment you were met with negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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