Autism is not the hardest part of my life. People tend to think that autism is so tragic and it is challenging, but many other things are so much more challenging. Autism and it’s comorbidities may make communication harder, make me more inclined to obsessive thoughts and not capable to choose my thinking, increased sensory problems, very restricted diet, etc. But that’s nothing compared to getting sick all the time, not being able to shower or get dressed, not knowing if I have the strength to get out of bed.
Yes autism is a disability and yes it can be challenging. However, compared to the problems I have with multiple chronic illnesses, autism is very minor. Communication problems isn’t that hard to deal with compared to not remembering who people are if I’m not around them all the time. Food sensitivities isn’t a big deal compared to sometimes I don’t have the energy to eat.
Yes my autism is disabling, but stop making it a huge deal. My other illnesses and conditions are much more challenging, debilitating, and difficult. My autism just me me, me. It doesn’t determine my health, put me in the hospital and has no potential to kill me so no I’m not worried about how autism affects me.
Sorry doctor I will not be listening to your advise. You say that exercise is the best way to help CFS. Then you go on into talking about CFS and Fibromyalgia. The first problem with your claim is that CFS and Fibromyalgia is NOT the same thing. Secondly, your advise is outdated.
I started having symptoms 5 years ago and wasn’t ever diagnosed or given any accommodations. Through this I went through college where I had to really active. Was I healthier in college? No I wasn’t. I lost weight because I used all my energy so quickly I didn’t have energy to eat.
Now I have moderate symptoms because of all these things I went through. In in the bed a lot but I’m able to take 2000- 4000 steps a day. I’m not giving that up to try to exercise and be bed bound. I don’t care what you think of me. You can think I’m lazy, ridiculous, or whatever you want, but I am not risking my health on something that can make me so much more severe.
It’s not like I haven’t done research. I’ve watched Unrest and read many stories from ME patients and how exercise, PT, etc made me worse. And these claims are supported by some professionals like Nancy Kilimas. Professionals now believe that what helps is rest and pacing yourself, not exercise. And you know what I feel much better after I take a rest and listen to my body.
I was diagnosed with Myalgic Encephalomyelitis (also commonly called Chronic Fatigue Syndrome) in December of 2017. However, I’ve been displaying symptoms for years. In my junior year of high school something changed. I got sick right before Beta convention and then after convention I wasn’t the same. I was extremely exhausted and felt horrible. After that I never really recovered to my former self.
I’ve been sick for years, but never got the help I need. Instead of doctors helping me I was sent to counselors and psychologists. I’ve been on antidepressants for about 3 years when I didn’t need them and they weren’t effective. It’s because my illness looks like anxiety and depression, but it’s not really that. I also was told that my increased sensitivity to sensory stimuli was because my Sensory Processing Disorder (SPD) was out of balance. I just need to do sensory therapy. My “sensory” wasn’t out of balance and I didn’t need therapy.
In 2015 I started having more symptoms. I started just collapsing when sitting or standing, but also got really dizzy. They did all kinds of tests and determined it wasn’t seizures. They never said what it was. In the summer of 2017 I started seeing another neurologist and again they determined it wasn’t seizures (epilepsy), but they never figured it out.
I was finally diagnosed with ME because me and my mom were determined. We printed out a bunch of stuff we found online and she wrote a letter explaining all the symptoms I’ve had for the past 4 to 5 years. I feel like if I haven’t been proactive I would never get diagnosed or it would get so severe I would be completely bed bound. Finally all the symptoms I’ve had for the past 5 years make sense, but I’ve done too much. Now I’m stuck in the bed or my room most of the time and can’t do much of anything. I wish I knew what was going on when my symptoms were milder.
There are many horrible symptoms of ME/ CFS such as dizziness, headaches, muscle and/ or joint pain, noise and light sensitivity, neurological problems, etc. However, noise and light sensitivity is by far the most debilitating. There’s not really anything that can be done for noise and light sensitivity. I can wear sunglasses or use noise canceling headphones, but it’s so severe it doesn’t make that much of a difference. I think it causes more fatigue just to deal with noise constantly than it does to actually walk or go out (if it’s not a big thing like the mall).
So I am both autistic and have ME/ CFS (Chronic Fatigue Syndrome). The two of them together can be very interesting. I can experience sensory difficulties and sensory overload with both but it feels different. With autism things like stimming and noise canceling headphones help tremendously, but the only thing that seems to help my sensitivities with ME/ CFS is avoidance.
It’s gotten so bad I’m really considering trying to find a way to soundproof my room. Noise sometimes bothers me so much I’m like just kill me now, this isn’t worth it. I think that the only way for me to move on with this diagnosis is to find a way to make my room a safe zone. I need to have my own space where I can relax, listen to music, write and do plenty of resting. How my life is now there is no where I can escape. I think not being able to escape is making my illness worse because I’m not able to properly take care of myself.
I want to talk about some of my experiences on getting disability and some advise on applying for disability. I started getting my disability in November.
So this is what happened…
The whole process took about 2 years. We first applied in April of 2015. I got denied the first time so we got a representative. We did the repeal and got denied again. When you get denied twice you have to do that repeal in front of a judge. It took about a year just for us to get the date to that hearing. The day before my hearing the judge canceled my hearing because he/ she had looked over my case. It took about another 2 months for me to actually start getting my payments.
If you’re considering applying for disability especially if you’re young and its an invisible illness/ disability I want to tell you the truth because no one did this for me. It can be long, exhausting process. It took me 2 years and 6 months from the time I first applied until I started getting payments. Also the denial letters, having to prove your disability can be depressing. Having people that don’t know you telling you that you’re disability isn’t that bad or that you can work can be difficult. And having them make snap decisions based on your age and education can be really difficult. I encourage you to have a support system in place whether that’s family, friends, or even a counselor because this process can be emotional.
This process can be long, exhausting, and emotionally draining, but stay strong. Don’t give up. That’s what they hope will happen to the bulk of claims. When it’s all finished you will be glad that you stood in there. Keep on going whether you have autism, other disabilities, or even chronic illnesses.