woman administering IV

Dear anesthesiologists, nurse-anesthetists, ER nurses and lab techs at the local hospitals and clinics,

Please don’t take my permanently-implanted IV access Port-a-Cath as a challenge to your professional ability to access peripheral veins. I have no doubt that you can, and do, access veins for lab tests and IVs all day long; in fact, I recognize that doing so is your job and you have been well trained to do that job.

 

I can understand why you might hesitate to use my Port: it is a sterile procedure with the accompanying risks of infection, it is more expensive because it requires a heparin lock when the access is removed and it’s a specific skill set that can be intimidating when you don’t see them very often. And for those of you in the position of the one who has to put me under anesthesia, I know how important it is for you to be able to push large amounts of fluids through the IV if something should go wrong in the operating room.

Believe me, I get it. But please look at it from my point of view: I did not go through the surgical implantation of a permanent medical device in my body just because I don’t like needles. For over 10 years prior to making that decision, I watched my veins deteriorate. Each time I needed blood work done (often two or three times in a month), or had a trip to the ER for an asthma attack, or spent several days in the hospital, I endured multiple attempts at needle sticks. In fact, a 10-day stay in the hospital required a central line placement because my veins kept collapsing under the pressure of constant medication infusions and constant hydration.

By 2012 I was being referred to the local infusion center to get my blood draws done because the local laboratories were no longer willing to try to access my veins. After two years at the infusion center, even those expert IV nurses were trying three or four different veins each time I came in for those necessary blood tests. Finally, after a protracted struggle and a complete blow-out of the last attempt, the nurse who had tried six (six!) different veins called my doctor and told him they would no longer try to access my veins and recommended he prescribe a permanent Port for me and I agreed wholeheartedly, making the request to him myself, bruises prominently displayed on my arms.

Two weeks later, I had a Port-a-Cath. In case you were wondering, the OR nurses had to try three different veins to gain access for my surgical IV. That provided the final confirmation that I had made the right decision to ask for my Port. Since getting my Port, I keep a standing appointment for a Port flush at the infusion center for the rare months that I don’t have a scheduled blood draw in order to keep this precious Port accessible for emergencies or surgeries.

So that’s the story of why I have a Port and I hope it explains why I fight so hard for its use when you try to tell me that you can access my veins without using it. Please know that it is not a slight to your abilities that I insist upon you using my Port for vein access, it’s because I want to make this a win-win situation for both of us. Thanks.

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Thinkstock photo via jm1366.

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“Spoonie,” a term often used within the chronic illness community, refers to someone who has limited energy reserves because of their condition. This comes from Christine Miserandino’s “spoon theory,” which many find helpful for explaining what it feels like to live with chronic illness.

However, it is often still difficult for others to truly understand the experience unless they have been chronically ill themselves. There are many harmful stigmas and misconceptions surrounding lifelong illness – for instance, many aren’t believed because they don’t “look sick” or are accused of faking because they were seen outside on a “good” day. These accusations can easily dissuade people from talking about their illness or posting on social media out of fear of judgment or a lack of understanding.

The reality is, if a spoonie posts something about their health journey, they’re probably just trying to be honest about their life or even hoping to raise awareness of their illness – not “seeking attention.” And if they post something non-health-related, it in no way detracts from the very real struggles they face daily.

Bottom line: We should all be able to post whichever photos we want to share without fears of the repurcussions. So, we asked spoonies in our Mighty community to share photos they wanted to post on Facebook, but didn’t. All the spoonies in these photos demonstrate what it looks like to be a warrior.

Here’s what the community shared with us:

1. “I have to wear a mask because I don’t have an immune system as well as I am very allergic to smells. The guy sitting next to me on the plane told the flight attendant he wanted to switch seats because he ‘didn’t want to die from whatever I was carrying. I wanted to post this on Facebook and Snapchat to show I can still look great even though I’m sick. But I decided not to. No one ever asks why you’re wearing a mask. They just assume the worst and don’t think about your feelings in the process. I choose to rock my mask.” – Elizabeth D.

woman wearing a face mask on a plane

2. “This is one of my holiday pics. I don’t post them because I am scared I will be accused of faking my illnesses. I have stopped to rest and catch my breath. I have EGPA vasculitis, heart damage and my lungs are failing.
It’s so horrible that I cannot just try to enjoy the days where I’m not at my worst as they are few and far between.” – Stacey T.

woman in a sun dress and sunglasses on vacation at the beach

3. “I was in the hospital for the fourth time that month for pain from endometriosis. I’d had so many IVs and blood draws that I was out of good veins. After four people attempted to insert an IV in six different locations, a nurse said the vein in my neck looked perfect and untouched. As you can see, I was not thrilled about having an IV in my throat.” – Shanée A.

woman lying in a hospital bed

4. “While this looks peaceful, I was in the middle of a really bad vertigo episode (I have Meniere’s disease) and could barely walk to the bathroom without falling over. My cats constantly hang out on the foot of my bed when I’m not feeling well.” – Brandi V.

cats sitting on the end of the bed

5. “In this picture I’m battling nerves that feel like static, a low-grade fever, horrible spasms and terrible exhaustion from my fibromyalgia. I hadn’t moved from my bed in hours and I honestly just couldn’t get the pain to go away. So I wrapped in my favorite blanket and held onto my comfort stuffed animal just to try to feel better. I’m now on day three of this round of flare. People don’t see the pain I go through. They only see an 18-year-old who lays in bed all day… if only they knew why.” – Connor D.

man lying in bed with his blanket and stuffed animal

6. “Here is my Foley catheter that I’ve had in for a month and counting. I took this picture to document my life with chronic Lyme disease. I would love to share it to my public Facebook page ‘Fight Lyme for Life’ because it shows the reality of Lyme disease, but since it’s literally pee in a bag, I thought it was too personal. We all go to the bathroom, but I thought I would definitely regret putting that up, even though it’s just real life and educating others about how this disease affects me and others.” – Cassidy S.

urine in a bag from foley catheter

7. “This photo [is] of me wearing my oxygen at the airport. I struggle with long distances and the oxygen helps! I was told it was ’embarrassing’ by someone and so not to post it. I have to admit that hurt a lot. I wanted to post it to show it’s not just the elderly who use oxygen. But those comments made me change my mind. I wish I’d posted it though!” – Yasmin M.

woman wearing oxygen at the airport

8. “This is a pic from right now actually. I’m in the hospital from once a month (on a really good month) to five times on a bad one, each time for about five days, sometimes less and sometimes more. For every time people know I’m here, there’s five other times they don’t. I wonder what would happen if people knew everything. I wish I could share everything so maybe they’d understand a bit more and be able to give me the support I need. Unfortunately this situation is very isolating and lonely and the more I try to share what I feel and need, the more it just pushes people away.” – Ye’ela B.

woman lying in a hospital bed

9. “My first infusion of the medication that will hopefully put me in remission. I was terrified sitting in the cancer center with a bunch of strangers and feeling nauseous and in pain from my Crohn’s.” – Amy C.

woman in the infusion center

10. “[My] flatmate asked, ‘Were you out last night?’ I just laughed and replied, ‘Ran out of spoons trying get up to the flat.’ They replied, ‘But it’s only two steps…’ You can imagine the rest.” – Andrew R.

man with scratches and bruises on his face

11. “The realities of chronic illness! I get severe bloating after eating. My GI said he suspects a motility disorder and generally diagnosed functional dyspepsia while waiting for results of various testing, including an endoscopy, colonoscopy, and probably a gastric emptying study. The most likely candidate is gastroparesis. I also have a whole line-up of chronic illnesses including Ehlers-Danlos syndrome and postural orthostatic tachycardia syndrome.” – Jadzia D. R.

woman's stomach bloating after a meal

12. “My daily med regime when I’m at my peak crappiness.” – Raquel N.

medications and pill bottles

13. “Going to the Brookfield zoo while having a flare-up. [I was] nauseated and dizzy but managed a few hours… I stopped posting on social media about my issues. No one believes someone who looks great on the outside but [feels like they’re] slowly dying on the inside… like, what is a chronic illness supposed to look like?” – Isabel Z.

woman in a mobility scooter at the zoo

14. “Getting ready for my 14th or 15th surgery probably when they had to rush me to take out my appendix and necrotic right ovary that lupus was destroying. This was after they had to take my uterus out for the very same reason along with terrible fibroids and uterine cysts. I’m not a person who likes to feel vulnerable and I didn’t post it because I didn’t want to show that side of me to the world.” – Joyll C.

woman wearing hair net and oxygen tube in the hospital

15. “Doctors don’t know why I’m in pain every single day [and] I have migraines every single day. The pic is me waiting for more than eight hours. I had aphasia and didn’t [get] solved, so I had to be hospitalized for observation. My boyfriend came to the rescue after work.” – Athaliah L.

woman wearing glasses and frowning in a selfie with a guy

16. “This is a photo with the left side being the fifth day of a nine/10 migraine and the right being a ‘good’ day where my pain was about a six. In the first photo I hadn’t been able to brush my hair for a week, I couldn’t see, my face was blotchy and my eyes were swollen and painful. I wanted to share to show that in both photos I am sick. If I look sick or not, it doesn’t change the fact that every day is an uphill struggle. My chronic illness is invisible but it still exists. I never ended up sharing it because I was afraid of being judged.” – Jess C.

photo of a woman with migraine next to photo of woman on a 'good' day

17. “Just driving trying to get away… I turn red, hot and sweaty like if I’m working out.” – Kelly D. E.

woman driving in her car

18. “I was in the ER with no magnesium and low potassium and my heart was erratic. I also was suffering a fungal infection and was very sick. I took the pic because I was worried it would be my last one.” – Naima W.

woman in the ER with pads stuck to her chest

19. “This one only took five tries in five different locations on my hands and arms. Sigh.” – Graves N.

man with an IV in his arm

20. “Because I’m fighting for disability, I know every move is being watched. So even though this took every ounce of strength and energy, and ruined my fingers, wrists, knees and shoulders, I desperately wanted to feel for a brief moment like my old self. So I did it. And I paid for it. But if I post this publicly, I run the risk of people (and the federal government) claiming that because I posted this one picture of me using everything I have just to feel in control again, I am somehow able to work full-time.” – Charis H.

woman climbing on ropes at the beach

21. “Lying on the bathroom floor because the walk from my bed to go have a shower was too painful and exhausting. People only see the happy, good side but that doesn’t mean our chronic pain isn’t real.” – Jasmine B.

woman lying down on the ground

22. “Shoot, I post mine, anyway! Here’s me having to sit down for a break after a shower made me feel like I would pass out. Posted it. We need to stop letting others make us feel ashamed of our illness and share our lives, regardless. Healthy people do it all the time. This is our reality. We live it every day, but we hide it from our friends and family. We go around saying, ‘the people close to me don’t understand’ but then we’re posting our best faces on Facebook all the time and not sharing the majority of what we actually go through. It’s no wonder they don’t understand!” – Vanessa B.

woman sitting down after taking a shower

23. “The picture seems like I’m having fun and having a laugh, yet if I didn’t laugh, I [would] cry. I cried many tears that day. Trying to get a nurse to understand what relapsing polychondritis is and trying to explain over and over to many of them the isolation of a rare disease. Sometimes I just had to laugh because I just couldn’t face the reality of being hooked up to an IV every two weeks for possibly the rest of my life. Yet to the outsider I look like any other 30-year-old.” – Bernie P. H.

woman making a silly face at her monitor in the hospital

24. “Waking up exhausted. Trying to decide if expending any energy on my hair is worth it.” – Nicola D. J.

woman in t-shirt with unbrushed hair

25. “I was having so much fun for once. But my meds have caused me to gain a lot of weight.” – Carlie C.

woman posing in front of angel wings graffiti

26. “Puffy, tired and flushed from chronic fatigue syndrome and Lyme. Went out for breakfast with hubby anyway.” – Karen W. N.

woman dressed up to go out to brunch with her husband

27. “Hair falling out after treatments, face and neck completely blistered and burning, face swollen from steroids. This is home, when the makeup comes off.” – Spoonie Strength

woman with scarf around her head


I see and hear a lot from those dealing with chronic illness about how it has affected relationships, more specifically friendships. My journey sounds similar.

Years ago, I remember my dad talking to me about having true friends, and if I could count them on one hand I should consider myself lucky. My friendships have ebbed and flowed over the years, getting close with some, and those same friendships fading slowly. Some friendships ended and I understood why, while others ended leaving me confused and heartbroken.

 

When I first began dealing with illness, I felt lost and confused. When friends realized I was going through something, they rallied around. Some offered comfort, some offered help, and others just reminded me they were there if needed. Something interesting happened after a while. When I wasn’t getting better, and it was becoming obvious this was going to be a bigger part of my life than I’d hoped, slowly but surely friendships slipped away.

In the beginning, I was frustrated. I couldn’t help what I was going through. I didn’t mean to bail on plans, or that I couldn’t “hang” late anymore. I wasn’t able to drink alcohol or eat at most restaurants. But I still wanted to see my friends. I’d begun to feel forgotten about. I realized though that I’d slowly also begun to isolate myself. How could I blame anyone for forgetting about me when I stopped reaching out too?

It’s a vicious cycle to get caught in. You want to do things, but are held back. You want to reach out, but are scared of rejection. You feel misunderstood by friends and family. You just want your damn life back.

If you’re lucky like me, you have some pretty awesome people that stuck around – ones who, while they might not “get it,” do their best to understand. They show patience and kindness. They do what they can to make you feel comfortable. Can’t eat normal foods? They ask what they can make for you. Can’t drink alcohol? They ask what you can drink. Have to reschedule last minute? They don’t stop calling because of it.

friends are medicine for a wounded heart, and vitamins for a hopeful soul

There’s also your online community – some of these people I’m lucky enough to call my friends. While we’ve never met in person, they have become an integral part of my life. We have an understanding of what we’re both going through. Advice is offered. Opinions are shared. You’re being cheered on by people you’ve never met harder than people you see every day. These friends of mine have kept me going on some of the darkest days. Having friends near and far keeps you wrapped up in love, even when you may not feel it.

So thank you to the people who have stuck by my side through the worst times – let me cry, held my hand, let me feel and reminded me how far I’ve come. And for continuously supporting me and pushing me to be the best parts of myself.

This post originally appeared on Hustle and Heart.

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Thinkstock photo via AntonioGuillem.


Suicidal thoughts can, at times, go hand in hand with chronic illness. Living in constant pain mentally and/or physically can be extremely difficult to endure long-term. Most chronic illnesses are there to stay, so unlike the grief you may feel from a short-term loss or trauma, it can be even more difficult to continue life as normal with chronic pain. There isn’t always a light at the end of the tunnel. Intrusive thoughts of ending one’s life can be even more present when other stressors (the kind that occur in everyone’s lives) are compiled on top of dealing with chronic illness. Individuals struggling with chronic illness may also avoid seeking help for their feelings, which can be a contributing factor for long-term struggling.

 

Let’s first discuss my opinion as to why individuals with chronic illness may avoid seeking help when they are having suicidal thoughts. I myself have several debilitating chronic health conditions. I belong to online support groups for those with the same conditions as myself. These online support groups serve as a way for individuals to get support from others in similar situations as themselves. Suicidal thoughts are discussed often. When I polled the members of one of my support groups in regards to this topic, I asked the question: Would they consider asking for help by calling a prevention hotline or admitting themselves into a hospital if they were to have suicidal feelings? 36 individuals selected that they would be unlikely to seek help from those options. 15 individuals selected unsure and nine individuals chose very likely to seek help. Individuals with chronic illness have also shared their feelings with me in regards to their hesitancy to ask for help. The most common reasons given were:

1. Feeling ashamed and guilty to admit they were having these feelings. Many individuals struggling with chronic illness have family and other commitments. Being chronically ill can already bring forward thoughts of feeling like a burden or disappointment. Individuals expressed feeling ashamed to have suicidal feelings when they had people in their lives whom they loved and did not want to hurt further.

2. Not feeling comfortable discussing their feelings with a stranger (and in many cases even discussing them with someone they are close to). Individuals with chronic illness are well aware of the feeling of being judged. Most chronic illnesses may appear invisible on the outside, which can bring forth feelings of judgment from others who do not understand the struggle they face internally. Avoiding judgment may be used as a safety net to avoid further hurt.

3. Worrying that discussing these feelings with a professional could have a negative impact on their future healthcare provisions. Examples individuals discussed with me were the potential of having insurance coverage affected, having pain management affected (medications taken away) and also having life insurance claims denied (for those few who were able to qualify. Life insurance policies are often denied for individuals with chronic illness).

4. Being on a watch in an unfamiliar place, such as a hospital. The thought of being placed on a suicidal watch in a hospital may be a scary thought for anyone. However, when you are chronically ill, being away from your place of comfort and even medications can cause great anxiety.

Now let’s discuss my thoughts on how the chronic illness community can be better supported on this topic.

1. The medical community should provide better options and advocacy for support. Doctors and other medical staff need to make mental health support a real part of the treatment plan for anyone struggling with chronic illness. Simply asking patients to fill out forms where they are asked if they are depressed (along with a dozen other questions) or even briefly saying to a patient during an appointment, “Do you ever feel depressed?” as a physician goes down a list of appointment check-offs is really not sufficient. The majority of the time, even though you may have individuals who are severely depressed, they may just answer “no.”

This is similar to the reason why when chronically ill individuals are asked how they’re feeling, they often answer with a short “fine” or “alright,” even though they may be feeling the complete opposite. When you struggle with chronic illness day after day, week after week, month after month, year after year, you learn that many times people don’t really want to hear the negative. You may also have received advice that was hurtful, such as “other people have it worse,” “you don’t look sick,” “have you tried changing your diet,” etc. When you have chronic illness you learn to just smile and nod your head and say, “I’m fine,” even when you’re not. You learn to push through the pain both physically and mentally. You continue through life many times struggling in silence and isolation.

Also, if you have experienced the letdown of bravely sharing what you’re going through with others, only to have them respond by distancing themselves from you (something that is discussed frequently among the chronic illness community), you may start using the protective mechanism of avoiding talking about your situation. Doctors and medical staff should be involved and engaging with their patients in regards to not only their physical health but their mental well-being as well. For example, instead of asking a question off a pre-written form such as, “Are you depressed?,” try saying something like, “I imagine having chronic illness must be tough on you and I’m sure it can be challenging at times. How are you coping with everything?” Open the door to conversation which will encourage your patient to feel more comfortable and vulnerable when discussing their feelings with you.

Please take the time to talk to your patients and really make sure they are OK. If they are not OK, do not just brush it off. Help your patients find the resources and support they need. Reassure them they are not alone and you are there for them. Perhaps they may need some counseling or therapy services or support groups. There are tools out there that may help them deal with their feelings but they need to be able to access them. Many times patients don’t know where to go or they’re concerned they’re not going to be able to afford the services. As their physician, it is your job to help them with getting the support they need.

2. Family and friends can make a difference. In many situations where a person with chronic illness is having suicidal thoughts, it is not necessarily because of one reason. Although being in constant pain and discomfort is likely a huge contributor, I have noticed suicidal thoughts in those struggling with chronic illness become more severe when at least one of these other factors are present:

– The individual is feeling unsupported by family and/or friends

– The individual is struggling with financial issues due to their chronic illness

– The individual has experienced some sort of life stressor such as a death, divorce, move, etc.

Below are my suggestions for family and friends to support individuals struggling with chronic illness in regards to the topic of suicidal thoughts and hopelessness.

1. Let them know you are there for them. Discuss what other stress factors they have in their life that are contributing to their current feelings. When somebody is going through an already difficult time, added stressors can make their depression/suicidal thoughts even stronger. For example, if someone has a chronic illness they are already struggling with, having an added stress, such as a death in the family or loss of a job, can make things more overwhelming for them. You cannot take a chronic illness away from them but you may be able to reduce stress in their life in other ways. Talk to them and go over the contributing stress factors in their life and figure out how you may be able to assist or how you may be able to gather others to assist. Be aware that financial concerns may be a factor as well and it may be difficult for them to discuss it with you. It is not uncommon for individuals struggling with chronic illness to become unemployed due to their health condition. Even with a valid health condition, it can be difficult to receive long-term disability benefits and many individuals end up spending years in court before they can begin to receive benefits. Before you can claim disability (an inability to work), you must generally not be working in any significant capacity. For this reason, many individuals continue to try to work even though they are disabled because they feel they have no options, which can be very difficult.

2. Offer nonjudgmental support and avoid criticism. Please remember there is a lot of guilt and shame that goes along with feelings of suicidal thoughts and for that reason, many times people do not want to talk about it. If someone close to you is exhibiting signs and you are concerned about them, make sure you offer nonjudgmental support. Be there to listen to their feelings but try to avoid making judgments on their feelings or making comments such as “others have it worse,” “you’re being selfish,” etc. Avoid comments that may make them feel guilty about having these thoughts. Check in with them regularly and offer your company to them.

3. Help them find joy. As someone wise once pointed out to me, the opposite of pain is joy. Therefore, somebody who is experiencing a lot of pain (both physically and mentally) would likely be off-balance in that regard. Ask them which things bring them joy in their life or what brought them joy in the past. Encourage them to discuss these feelings with you. Try to help them figure out what gives them joy and how you can help bring more of it back into their life. This may be a matter of getting them out of the house or coming to visit them, sharing a hobby, etc.

4. Hugs. I know this last one sounds rather simplistic. However, at the end of the day, just knowing someone’s there who cares about what you’re going through, who wants to help you, who makes you feel like you still have a place on this earth… that is the most powerful medicine of all.

Please know if you are having these feelings, you are not alone. I know it may feel that way at times, but know others feel the same way as you at this very moment. My heart goes out to anyone struggling with the pain (both physical and mental) of chronic illness.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or text “START” to 741-741.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via uba-foto.


September has come, and for those of us in the southern hemisphere, the sunshine and reprieve from rain that comes with spring is very welcome news! While us spoonies who have circulation issues rejoice at no longer being constantly bitterly cold, and those of us with mobility issues are thankful for mild days without the rain that can complicate our efforts to venture outside, we must also remember to be cautious and preemptive in the new season.

 

Here is a list of tips I like to call the Spring Survival Guide (Spoonie to Spoonie):

– It’s tempting, but don’t completely shed the winter clothes. On the first day of spring, I made the decision to wear much lighter clothes, leaving a lot of my body uncovered. Even though the sun was bright and the temperature was mild, I was freezing cold and very much uncomfortable due to my poor circulation and temperature sensitivity.

Stick to a schedule similar to your activity in colder months. In spring, I often experience a relapse of my illness due to overexertion (which occurs often subconsciously). I’m tempted to use the extra hours of daylight to fit in short walks after my daily activities (going to class, medical appointments) but it’s incredibly easy to overdo it. So, if you’re looking to make some spring changes to activities, it’s important that you schedule these conservatively.

– In the spirit of the season, make a ‘”spring cleaning” goal. This could look like anything from a traditional clear-out of unwanted items to the tying of loose ends such as paperwork, personal projects, outstanding work tasks or even getting back in contact with old friends.

Re-immerse yourself in an old hobby or interest. Spring is considered a symbol of youth and of renewal, and it’s important for us spoonies to engage with the things that make us passionate and excited. The way we engage with old hobbies, especially in cases of hobbies you had before illness/disability, requires a new approach sometimes and can open up new avenues of exploration for us. My own example would be dancing: I once spent over 20 hours a week dancing and teaching dance, and for a while after getting sick I was resentful and upset towards the idea of re-engaging with dance in a way other than being a dancer. Now, after realizing there are more ways to engage with dance than as a dancer. I am able to enjoy watching dance performances and have formed a heightened appreciation for the music and choreography.

– Last but nowhere near least, continue to know your limits, respect your body and assertively manage your health. 

Enjoy spring, lovely people, and take care. May the spoon be with you!

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via XiXinXing.


As I woke up this morning, my brain once again continued its never-ending endeavor by traveling at light speed. I had so many thoughts, ideas and questions that seem to collide with each other too early in the morning. I’m trying something different with my blog page in the attempt to reach out and connect with as many individuals as I can with God’s help. I had a bit of a revelation last evening while the man I’m seeing and I were having dinner. Seems like an odd time for me to be thinking about information in regards to chronic illness, but I’m happy he and I were on the topic.

 

I’ve discussed in a past blog what it’s like to date while having a chronic illness. I personally have had some pretty bad outcomes when it comes to having to disclose information about some of the health issues I struggle with to the guy in question. I’ve noticed the biggest issue was, once again, their lack of desire to understand. These guys must have not had the experience or did not possess the maturity on being able to understand that chronic illness does not define you. Indeed, it sets things back and makes life more of a challenge depending on what the individual has to deal with on a daily basis, but the illness itself doesn’t make us who we are. The man I’m seeing now wanted to know what I have to deal with and how severe it may get, not because he was worried about how it might affect him and his life predominately, but because he was more concerned with understanding how these issues affect me.

Which brings me to the topic at hand. There are so many blogs out there that discuss how vital understanding is when it comes to a chronic illness. If someone doesn’t understand, it makes the maze that much more of an inconvenience for the person struggling with it because they not only have to go out of their way to deal with the symptoms of the illness, but they also have to try and deal with emotional trauma others may leave them with. We survivors are already traveling through this maze involuntarily, not knowing if or when we will find the path that leads us out, allowing us to experience a good/pain-free day. Most of the time we spend days, weeks or months repeatedly running into dead-ends, forcing us to retrace painful steps. The very last thing we need are more dead-ends added to such maze, decreasing our chances of finding the path leading out.

So, how can we utilize preventative measures in regards to the attempted construction of dead-ends in a seamlessly endless maze?

For starters, it’s best to really know who it is you wish to surround yourself with. How mature are these individuals? How receptive are they to news they may not have much knowledge about? Do they have an adaptive personality? Can they be trusted?

These are just a few select questions I try to consider when I am placed in a position where my health is brought up. I instructed that when it comes to dating, it’s best to be absolutely honest, but I also warned that if you feel as though this person will not react positively and maturely about the news of your chronic illness, it’s best to avoid the topic and/or the person altogether. The very last thing needed is another stressor added to the equation. This returns us to the importance of really getting to know a friend, a potential significant other or even family before such truths are revealed.

My biggest issue now is with family. I’ve known these people all my life, but the unfortunate reality is that with age comes change. People, in general, change over time: how they deal with stress, how they deal with unknown news, so on and so forth. In their youth, they may have been exceedingly immature and lacked the ability to properly respond to unpleasant news. Yet, in their middle to older years, they may have become very mature and able to respond sufficiently to distressing news. All of these changes in personality have to be observed over time in addition to how close you are with them. I’m not close with many of my family members, so I don’t waste time trying to describe what I have to go through on a daily basis. I’d be wasting my breath and energy with the attempt. Those who I am close with have shown me their maturity and how well they can adapt to things they may not have as much knowledge on. This is what I look for.

Secondly, ask yourself why they are asking about your illness. Are they curious for selfless reasons, or are they curious purely to be selfish?

So what do I mean by this? Let’s say you and this guy you’re interested in decide to go on a date. You don’t know him well, but you’re wanting to give it a try. Halfway through your date, you start to have a little bit of a flare-up and have to deal with it the best way you can without drawing an exceeding amount of attention. Your date notices anyway, and comes over to ask if you’re feeling well. You respond with honesty and say (let’s use the example of fibromyalgia) you are experiencing nerve pain and have to sit down for a little bit. He give you a weird look and asks what you mean by “nerve pain.”

Before answering, remember the tips I have discussed about reminding yourself to ask the above questions: how well do I know him? Yes, it’s important to be honest when dating, but you also have to keep in mind how comfortable you feel with disclosing that kind of personal information. Ask yourself: has he given off a good impression? If so, do I feel he will be mature about the news?

Let’s continue on with the date. You come to the realization that you’re not exactly comfortable yet and wish to get to know more about him first. Therefore, you politely explain that you’re not feeling well but are not entirely comfortable yet with going into detail. This will also be a test to see how he responds. Does he respect your decision? Or does he become defensive and distant? This will show his maturity level and whether he is selfish or selfless. If he respects your decision, then you’ll have more comfort knowing he is asking because he cares about you, instead of asking in the attempt to “save his own keister.”

Sometimes, we will make mistakes. We will entrust someone with information about our health when they are not mature enough to handle it or when they are not exactly trustworthy. It’s bound to happen. The important thing to remember is to learn from it and not make the same mistakes twice. It’s hard enough having to keep things we want to talk about bottled up inside of us, but it’ll be even harder having to deal with the repercussions if we are not careful.

The more time passes, the easier and less complex the maze will become. We also have to look for the signs that lead up to the exit, or to another brick wall.

This post has appeared on Strengthening the Muscle of Faith and Amanda’s blog.

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