Chronic Illness Chronicles

Most of my illnesses are invisible. Invisible meaning they aren’t noticeable to those who see me passing by, or even people like my coworkers. Really you wouldn’t know there’s anything I struggle with if you look at me.. unless I’m in a flare but even then you would just think I have a cold or something like that. Invisible illnesses can be frustrating because people believe you less, or question you. By people I mean those who do not know what you are going through, your support system is not included in that. 

Being a young person who is chronically ill has many challenges. Especially when you don’t appear to be “sick”. This past weekend I had an encounter with a friend who asked to grab food and I said I’ll have to let you know I’m so exhausted and they replied with “too exhausted to get food really?” And I had to say yeah living with chronic illnesses remember?  I need to listen to my body. Their reply was kind and compassionate and replied by saying I’m sorry I forgot. That is just a simple example of how invisible illnesses can be. Because I don’t appear to be sick, oftentimes people forget or question why I may need to rest. 

Another example is at work. My supervisor would often give me extra work to do because they thought I could handle it and they knew I had some illnesses. Then one day I had a really bad episode at work and they witnessed the whole thing. After that they said to me “I had no idea it was like that I didn’t know you were that sick I’m sorry for pushing you so hard”. It took my body getting to a very severe state, for them to realize Oh she isn’t just making it up? 

Parking in handicap is something that I also struggle with, even though it helps me so so much. For one I just feel funny using it. I feel funny because I have internalized others judgments they put on me. Such as, I am too young to need that and I appear able bodied, I should let someone else use the spot. I try only to use it when I really need it, but that’s most of the time. I also acknowledge that I am young, so that in itself makes me feel really uncomfortable. If Im going out with new friends or on a date I rarely use my handicap placard because I feel embarrassed and like a loser. The embarrassment that comes with medical equipment or handicap parking is challenging at any age. Toni Bernhard has a good chapter about this in ’How To Live Well With Chronic Pain and Illness’, this book is linked on my ’Check These Out’ page. I recommend checking it out, she could not have explained it any better!

There is also a sense of fear that comes with these new challenges. I am very scared of having someone harass me for parking there. I have seen it happen to so many people. One lady even called the cops on my mom once for parking in handicap parking even though she has been able to use handicap parking for as long as I can remember. Whenever I park there and exit my car I try to rehearse what I am going to say if someone makes a comment towards me. Luckily I have not had anyone approach me yet, but I get some judgmental looks. There was even one time I thought I felt good enough to drive but I got to the store parked in handicap and had to call my parents to come pick me up. As I was sitting in my car waiting for help and trying not to faint I could see so many people looking at me and making comments. Although I could not hear them my head went right to negatives. I also experience these looks daily by 2 coworkers. Every single time I park there and get out they give a look and make a comment. Truthfully I am waiting for them to say something to me so I can explain why. But even if I explained why they may still pass judgment. But those are the struggles of having an invisible illness. 

There are even doctors who will believe you less based on your appearance. When I first got really sick I probably looked sick, but not as sick as I was. To the outside person you would not know the struggles I was facing. I was lucky enough to have amazing doctors that validated my experiences, however in the past before it got really bad I had many doctors dismiss me and I know many friends that have had this experience as well.

Throughout the early stages of my diagnosing process I barely left my house so I did not have too many outside people to worry about. But when I started being able to drive and work that’s when things got a little more stressful for me. As my treatment plans continued I was able to get more physical support from my doctors to help in my day to day life. When going to doctors appointments, especially on high pain days, I was offered(and used) a wheel chair to get from building to building. When I travel I am able to get a wheelchair and early boarding for my flights. I was able to get handicap parking as well. I also have a few new “medical equipment” items I use to help my daily life. These are my compression socks, and my abdominal binder.

Now that some of my invisible illnesses are turning slightly less invisible I am finding myself back in that stressful state of what people will say, wanting to “push through” so I don’t have to use any of the items listed above, and waiting to be harassed about parking LEGALLY in a handicap spot. Or being judged for wearing my abdominal binder. That one stresses me out because I feel like others will think I am waist training – which..whatever it’s my body even if I was I can if I want to- but I struggle with body image and that one just kinda gets to me . I’m trying to find ways to wear it so that it does not look as noticeable, but I am also trying to just embrace the fact that I need to wear this because it helps me so much. Even today as I am writing this I am wearing one but I am very self conscious that I need to wear it to work and what the kids/my coworkers will think or say. I try to find ways to cope for instance I bought a few colored binders so if they do show it doesn’t look so medical. Don’t get my wrong something looking medical is fine but sometimes it doesn’t match my outfit and I still wanna feel a sense of normalcy!

I wish people would ask questions instead of staring or passing judgment. If someone asked me hey why are you wearing that whats it for? I would feel so much better. All throughout life, chronic illness, mental illness, anything really, you need to learn to not care what others think. But in a society that is so focused on image it can get hard. If you have any medical equipment/devices/etc send me a message and let me know how you cope!

My best advice…that I should probably take myself… those who know me and my situation understand why I park in certain spots, why I use a wheelchair at appointments when needed, get early boarding at the airport, and wear my abdominal binder/compression socks, or any brace that I need for the day, are the only ones who matter. Strangers passing judgment is not beneficial to me, or them and they don’t understand what is going on in my life. So why am I going to let a few unkind looks or words ruin my day… I have enough to worry about!