Invisible Disabilities and Their Lessons

My son has a form of high functioning Autism. Being his mother has prepared me well for living with a chronic, systemic illness. His disability was also very invisible to most people. I learned fast to educate myself as much as I could about his disorder, his needs, his medical appointments and specialist appointments, his therapies and how to help him overcome his challenges by leaning on and building his strengths. All of those skills are completely transferable to my situation (and any chronic illness condition really.)

My son is now 24 and is a wonderful advocate for himself. Here's some things being his mom has taught me that's relevant to dealing with any chronic condition:

1. Document EVERYTHING! Keep your own records and keep copies of anything important. I have my own binder where I keep research studies that apply to my health, important test results, handouts doctors give me and referrals from my health insurance.
2. You won't know if you don't ask. I never assume that I won't be able to have something unless I ask. I got my son excellent occupational therapy when he needed it and now I'm in the process of doing the same for myself.
3. Work around your disability. There are some things that are still hard for my son like tying his shoes or riding a bike. He wears slip on shoes and loves to walk everywhere. I'm no different. Carrying heavy bags is hard for me, so I'm more and more getting big bags with wheels that I can push or pull instead of carry.
4. Be organized about your medication. A weekly pill box (the kind with the days of the week on it) is all I need right now. But in the past I've used alarms, individually labeled dose bags and other tools to remember to take my medication. My son also has a system that works for him. It's all about finding a routine that works for you and sticking with it. What works for him is a tray that he keeps his keys and wallet on next to his pills. Then before he leaves every morning he takes them.
5. If someone tells you "no" ask "why?" I don't take no for an answer and need to hear the logic behind the "no." Sometimes I can even change their mind.
6. Don't be embarrassed of your disability or shy away from advocating for yourself. My son is brave, amazing and will talk very openly about having Autism. He disclosed to his employer during the interview and got the job anyway. It was something we talked about before hand and he felt it was important to be transparent because it's such a big part of who he is. With an invisible challenge there's a pull to hide your needs and not disclose. My son inspires me to advocate for myself instead.
7. Educate yourself as much as you can. Knowing all the language about Autism (words like "stimming," PDD-NOS, DSM, comorbid...) was very important when talking to professionals who could help us. It's a shared language that made them take us seriously and quickly communicated what we needed. Now I'm doing that for myself with RA. I could say "I'm having tingling in my arms and legs" or I could say "I have stocking-glove pattern neuropathy." Both basically mean the same thing, but the second is in a language my neurologist will understand and respond to.
8. Find good friends. If someone didn't want to be his friend or wasn't interested in him, my son couldn't have cared less. He moved on till he found people who did. Subsequently he has a very large social life and some truly wonderful friends. Many have been there for him for years and years. I on the other hand tended to draw people who would just take and take from me. Over time I just didn't have the spoons for that kind of a relationship anymore and I moved on.
9. Always think the best of people. My son is incredibly kind and is always there to help other people. He's told me some amazing stories of seemingly small things he's done at work (like comforting someone whose having a bad day.) He has a gift (like his father) of seeing the good in people and brining that out in others. I tend to be much less trusting and keep more to myself. It's something I'd like to change though.
10. Give things a try. My son trusts his doctors and always at least tries what they suggest. I on the other hand sometimes feel like I know better and am hesitant to trust my doctors. I'm trying to let other medical professionals in and allow them to help me, but it doesn't come easy to me.