Having an Invisible Illness as a young adult
Hey there!
We've all heard of a lot of people being diagnosed with various invisible illnesses at a very young age - be it mental illnesses like anxiety or depression, or physical ones like rheumatoid arthritis. But.. what is it like having invisible illnesses as a young adult? (By young adult, I'm referring to 18 to late 20s. How does it feel listening to phrases like "You are too young to be this sick!" "You don't even look sick" "I'm sure you're okay" "I'm sure it's just a phase" No, these are not the best things to say.
As a young adult, it's very hard to make people believe that what you're saying is true. Especially when it's an invisible illness. When you are faced with a chronic illness as a young adult, all of the typical decisions you should be making are quickly put on hold. Up until now, you were considering what kind of education to pursue, your career aspirations, relationships, and even where you will live. All these are put aside, however, as you are forced to make immediate decisions that impact the rest of your life.
Things like how well you accept (or do not) accept the diagnosis of your condition, which medications to try, when side effects are worth the risk and when they are not, and how to find the right physician. While friends are deciding which party to go to were at home trying to make sense out of our latest lab test results, weighing our options for alternative treatments, and deciding to have a good cry or just go to bed and hold back the tears one more night.
Laurie Edwards, author of ‘Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties, says, However infuriating and irrational such comments are, they only have the power to define or validate our conditions if we allow that to happen. There are all sorts of reasons why people find it easy to scorn or deny illness, especially in younger people who ‘should look and act healthy.
With each chronic illness, most of which are invisible, people will doubt that your illnesses impacts your life as significantly as it does. If you are a young adult, they will be even less likely to understand that feeling better requires much more than a good attitude or a little bit of exercise.
Thank you for sharing this perspective - I'm sure there are many who can relate to the struggle of having an invisible illness when many assume they are young and healthy and struggling to get the support they need.
Thank you. I'm 16 (so a bit younger than you suggested) but I've been leaving at least six years with my disease but probably my whole life. And I feel so invisible. so often people don't take my word for it, they call me a liar. I received an official diagnosis this spring which has helped tremendously but I'm 16 and my whole life got screwed up by something no one can see and because they can't see it they often don't believe it.
This is my life and it has taken over. I hate my invisible illness.
It drives me up the wall when people say I'm too young or assume I'm exaggerating a minor illness to avoid doing things. Even my mum smirked when I wrote down brain fog in a medication record for my new qualification, but it applies to me. It's embarrassing to have brain fog, when you forget things easy and forget what you were saying or your brain just can't process things as good as it used to because of your condition. I look young and fit but I'm sicker than people twice my age. People don't take me seriously. 
I'm 22 and I've lived with my condition (Ehlers Danlos Syndrome) my entire life. I only received a diagnosis a few years ago though, and as it's a condition that causes chronic pain flare ups that are off the charts, I had to deal with a lot of people not believing me. The most important thing to remember is that your symptoms are valid, you are feeling what you are feeling. I've been told I was too pretty to be sick, too young, looked too happy to be in chronic pain, and that most scans showed nothing. Last year I had a craniectomy because I had such bad headaches, even though the scans showed nothing. When the surgeon came to discuss after he told me my vertebrae were entirely unstable and that my brain had been compressed. Diagnoses help us to explain to other people what we have, but really the majority of people will still not understand. To some degree, you need to harden up against the ignorance. Most people have never experienced chronic illness, and that's very lucky for them. Personally for me I've found that being completely open about my limitations and symptoms is best. If friends invite me out to say a concert, I tell them that I can't stand for hours on end, that I need to be able to sit. I make clear what accommodations I need so that they're not left guessing at my needs. People are still ignorant, especially doctors, and that's a problem we all have to tackle. Joining a support group, using teaminspire to talk with others who have the same conditions, writing letters to chiefs of staff at the hospital, educating the public through whatever means you have at your disposal - these are the ways in which we combat the ignorance and unfairness that we face. It's not easy, it's painful and emotionally draining and tiring, but this is the reality we face.
@CourageDearHeart
Thanks for sharing this. I too suffer from eds and have just started that long rocky road we travel after diagnosis. My friends and famil have only just begun to accept there is anything wrong with me nearly 18 months after diagnosis. So strangers will be a massive battle. I find criticism and unhelpful sayings like in above posts pretty much daily. It drives me mad at people's ignorance. Especially when I park in a disable space I've had arguments with people over it because "I don't look sick"
@Saironia
I completely understand. It's a lot to deal with, especially because EDS is an umbrella disorder for so many other issues. So many doctors in so many fields, and they're just terrible at communicating. I've had notes left on my car before, not a pleasant thing to read. Sorry that you're dealing with all this, but time does help. It gets easier to explain and the right pain mgmt can change everything. If you're in the US Dr. Chopra in RI is amazing. Feel free to PM me if you have questions about doctors along the east coast, I've seen my fair share and might be able to refer some useful ones (especially if you need a geneticist, PT, or neurosurgeon).
I have been dealing with one debilitating illness after another, often mulitple at once since I was 18, now 30. I have jettisoned my dreams one by one as my illnesses forced me to continually make concessions.
I don't have one neat label to explain to others what I am going through. The empathetic learning curve is too much for me to even bother meeting people anymore. I have retreated into isolation.
I don't live, I just exist as disability has stolen so much from me. I am a spectator to my own life, not a participant. I don't keep track of time anymore. Everyday blurs into the next. There is no Monday or any other calender day because everyday is the same, no work, stuck at home. The only break to the monotony is the occasional doctors appointment which never accomplishes much other than to cause my morale to further deteriorate with each visit.
No one is going to understand, and even if they did there is nothing they could do anyway and eventually my health would exhaust them and myself. Until someone or something ends my suffering, I will just do the opposite of mindfulness, and dissociate from it all, retreat into my head and pretend I had a different life.
@Noca
Had the same strategy for a long time. Still kind of do. Try to have others. Can you describe your illness or is that, too, a pain?
