Thoughts of an Aspie:My Journey with Chronic Illness

by Melissa K. Vassar-Belloso

My Journey with Chronic Illness

By Melissa K. Vassar-Belloso

Introduction

In the past I’ve definitely mentioned having less than perfect health but I am coming to a strange place in life in a lot of ways. At the age of 31 and despite overwhelming health factors I have a job I love and a person to share my life with. I have a wonderful family, friends and medical support. Most importantly, I’m still standing and able to tell my story.

Starting Out

My story begins innocently enough with a very pleasant childhood only slightly derailed by undiagnosed autism. I was admittedly very awkward as a child but I still made friends, did well in school and developed into an intelligent and creative person with a good heart and moral grounding. I grew up in a small town in Pennsylvania to two middle class and hard-working people who have dedicated their lives to the teaching industry. I was never too much of a brat but my husband will tell you pretty readily I can be a little spoiled at times.

I was quiet and somewhat reserved growing up but I didn’t face my real troubles until high school. My freshman year of high school I began to have a lot of problems with depression and iron-deficiency anemia. I was an A student but depression hit hard and I missed a lot of school and dropped to failing. I did still graduate but the stigma of a pity graduation is hard to get rid of, even if I’m the only one who knows that’s what it was. Regardless I have always been a hard worker. I have held a job despite my disability since high school and sometimes had a few at a time to help pay my medical expenses. It would be a lie to say that I wasn’t disgruntled about how my life was going. I had to somehow process a lot of adult problems with a teen brain which was often a chore.

My mental health was a plague for years but I had a very understanding man for a manager at the CVS I worked at. He gave me a chance not a lot of people would and I was truly blest for that. I have had a lot of wonderful people in my life and on my journey and I could never thank those people enough.

Searching for a Answers

My diagnosis changed over the years from clinical depression to bipolar but I also had anxiety and a sometimes debilitating case of anemia to compound with. I have seen many doctors and been on multiple pills to try to “fix” me. I have also been in a mental hospital multiple times and attempted suicide about three times. Most of these things I repress or they just blend into the blur that is my life and lot.

It’s hard for anyone to say they are truly a good person but I can attest I’m probably a decent person. I work hard and don’t ask for what I haven’t earned. I treat other people decently and respect my elders. I always stay professional at work. As people I think the expectation is that if we do what we’re supposed to and act like a decent person something good will eventually happen. It’s hard to say how much I believe that logic now. Between my various health problems I am burdened financially, mentally, physically and emotionally. I have to give myself a pep talk just to get out of bed most days and I rarely complain, take it easy, or ask for help.

I’ve lived under the confusing and unpredictable umbrella of being bipolar for years and I dare say I almost accepted it. This was around late 2016. Unfortunately, peace was not to be had. I was hospitalized voluntarily on two occasions in 2016. The first time for my bipolar and the second for severe seasonal affective disorder. I was no stranger to seasonal affective disorder but because I had changed medications it was worse than in previous years.

If you’ve never been in a mental hospital you might imagine some crazy images. It’s actually very clean and comfortable in most of them. You have a semi-comfy bed, regular meals and a visit with a doctor each day. You can be dragged in as a 302 or you can be there voluntarily. All my trips to a hospital were voluntary but it doesn’t make it okay. It gives you a lot of time to stew about life and yourself which I often find to be  a bad thing. After about 72 hours it can feel like a very cozy prison. I’ve always had even more trouble in these facilities because I don’t seem sick enough or fit a typical portrait of a mental health sufferer. Too many doctors want to fit you into a mutilating, substance abusing mold with no semblance of sense or order and I have never been that. I grew up having a solid support system and healthy outlets. I’ve always been a strong hand in my own care and very self-aware.

You might think that’s a good thing but in the mental health system that puts you in a sort of 1% category. Mental health is usually modeled to go right down the middle so those not fitting the mold of what mental illness is believed to look like tend to fall through the cracks and not get taken seriously. All my life I’ve had to fight for treatments and prove there is indeed something wrong.

Aside from this I was indeed starting to be able to cope with my bipolar. That was until around mid 2016. I didn’t feel right anymore and I needed a medication change. When they didn’t make the change I made the poor but enlightening decision to just stop taking it. It took me a month and a half off of the mood stabilizer to realize I wasn’t having mood swings and after consulting with a new doctor I was correctly diagnosed as being on the spectrum. I have Asperger’s and I’ve had for a long time.

Adjusting to a New Outlook

After identifying with bipolar for so long it’s been hard to this day to adjust mentally and dismiss years of pills and treatments I didn’t need. It’s not hard for me to forgive the physician’s that made the mistake though. At the time I was having problems autism was still a bit of a mystery and hard to identify. I truly believe that every medical person I saw was doing the best job they could and I can’t fault them for that.

In any case, my journey is far from over. I have had to more or less accept the world in a whole new light. Noises seem louder and lights seem brighter. People are harder to read and I sometimes don’t have the empathy or focus to connect with the world around me. There are a lot of things I’ve bene doing socially for years that are wrong and need relearned. Every day is something of a new experience for me with a new dilemma that I have to deal with using a differently wired brain.

As the wrong medications left my system I began to function mentally as I was born to and as a result my whole approach to life is different.

Adjusting to life as a person on the spectrum has been somewhat difficult. It has affected my job performance, socialization and really my entire perception of life. There are times I can’t feel emotions or identify them. Many times I can’t understand everyday conversation with people. The things I’ve been identifying as panic attacks for years may have been sensory overload. For every piece of my life being on the spectrum explains it adds an obstacle. As an adult I’m at an age where I still want to be focused on career and happiness or just being settled and moderately healthy but it’s a hard thing to do most days. It has been so hard to find help and harder to secure it or get it covered by insurance. Everything I need to be better is a fight.

Daily Burdens

On top of these struggles I have suffered with fibromyalgia and still with severe anemia that requires iron infusions annually. I have to a point learned to accept these conditions as well and yes I’m in pain everyday, always fatigued and weak with a horrible immune system. It’s something you get used to over time and you just push yourself harder and keep going forward.

My most recent struggle has been that I also have hypothyroidism that is turning out to be hard to get diagnosed. For over a month I’ve been severely fatigued to the point of sleeping whole days and having a plethora of other symptoms affecting everything from my bowel movements to my appetite and sleep. It’s still getting determined whether or not I’ll need surgery on it. In the midst of this my medical bills are piling up and my check is still a part-time check. Most people in these situations would just lay down and give up but I come from very stubborn blood.

I still get up if I can and go into work. I do my best and try to sift my personal garbage out of my work day then go home and occasionally pray to not wake up the next day. But in the end I guess what matters is that I do get up. The day I don’t try to get out of bed is the day my world stops.

As a chronic illness sufferer I think you have to reach a point where you can honestly say to yourself you’re doing the best you can and surviving.

Conclusion

There are so many negative and painful things in life to focus on but maybe the better thing to focus on sometimes is being alive. I may wake up depressed, in pain and seeing the world a little differently but my Illnesses don’t define me and they certainly don’t own me. You might be sitting there with your own burdens and thinking it’s unrealistic to have any inkling of optimism but keep in mind we all have something and what makes the difference is how you deal with that something. It’s easy to focus on just staying in bed or not trying at all but challenging yourself to think about what you do have and what you can do can be one less weight on your shoulders.

 

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