On the Chronic Illness Battlefield, My Enemies Are Not Just Physical

Amy Baker avatar

by Amy Baker |

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My fellow chronic illness warriors: You’ve never met me, but we’ve sat alone in the darkness apart yet together. Those of us who suffer from conditions like scleroderma have a higher risk of developing mental health issues. As someone who has multiple autoimmune diseases, I, too, have my bouts of depression and anxiety.

I had always been able to do anything I wanted to do. I could lift, stand, push, pull, and squat, and my body would do whatever I willed it to do. I worked two jobs, went to school, and raised children while pushing through fatigue and pain. My physical ability felt much younger than my actual years. 

It’s interesting what we take for granted.

For months and even years, I struggled with what was going on. My body was turning on me. Physicians seemed to wrestle with finding a diagnosis that would fit all my symptoms. I became a prisoner of my own body, swimming in the waters of the abyss while fighting the crashing waves of fatigue. Those waves pulled me beneath their currents and kept me there. Simply put, the fatigue was interrupting my life. It was debilitating. 

My mind was unable to comprehend what was happening. My body felt like it was shutting down, and I was powerless to complete even the most mundane tasks. This feeling is not conducive to running a household and business, to being a wife and mother. I had to get it together! But how?

That was the million-dollar question, and I needed answers ASAP.

My mental health was taking a toll. I couldn’t tell if it was fatigue or depression. Later I’d realize I was depressed because of the fatigue, and the depression added to fatigue — a vicious Catch-22. As my ability to control my body waned, the depression coursed through my veins. An indescribable feeling of sadness consumed me. Would I ever go back to feeling the way I used to?

The tired me missed the old me, and the new me was not my cup of tea. My appearance took a hit. And anyone that knows me is aware of my desire not to look like a wildebeest in public. I wanted to feel confident in my appearance again. That would take an extraordinarily long time. 

I cried in complete privacy. However, when the depression took center stage, my tears would leave a hot, salty trail down my cheeks. I was mortified that I could not seem to control my emotions. I would ride the ebbs and flows of the waves of uncertainty and doubt about my future. Anxiety was my new best friend. Every ache and pain seemed to set off a new wave of concern and sadness. Each doctor’s visit seemed to introduce a fresh hell of diagnoses. With every new development, the fragile wall I had erected to protect myself began to crumble. 

I was losing sleep and felt like I was losing my mind. I didn’t want to be a burden to my family. I certainly don’t think it’s every little girl’s dream to grow up and become someone with multiple life-threatening, life-altering illnesses. Having to ask someone to help with even the smallest of things was difficult. My guilt was overwhelming even though, logically, I knew I didn’t ask for these diagnoses. My can-do attitude and can-but-having-a-hard-time-doing body were constantly at war. The internal battle was wearing on me. But on I must trudge, so trudge I did.

When my ex-husband and I were married, I was vibrant, ambitious, and driven. I worked as a regional marketing director and then found my calling as a recruiting manager for a home healthcare company. My body continued to betray me, and with each passing month, my body and spirit weakened. Where had the woman he fell in love with gone? I didn’t recognize myself, and I know he didn’t, either. Insert additional heaping helpings of guilt.

I wondered if I would ever be able to break those chains of remorse. I went from working more than 50 hours a week to being unemployed. I could no longer manage the hours that allow ambitious people to succeed. I sank even further into despair. I felt worthless.

Despite my rampant feelings of inadequacies, I started feeling a subtle, slow acceptance of my new me. The guilt still lingers and probably always will remain. I had to take responsibility for my feelings. To do so, I reached out to my physician to have him refer me to a mental health professional.

Being vocal about an illness and its effect on mental health is imperative to finding the right treatment program. Just as we focus our energies on treatments for physical symptoms, we must staunchly advocate for mental health treatments. May is Mental Health Awareness Month. Let’s seek help for mental health issues — it’s a courageous act.

***

Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to scleroderma.

Comments

Carol Volckmann avatar

Carol Volckmann

Amy, your column hit home and my heart aches for you. Sclaraderma caused my PAH. Sclaraderma has been/is a wrecking ball. My PAH is rather stable with 3 medications but Sclaraderma keeps rearing its ugly head in so many different directions including fecal incontinence. I now need an ostomy. I have no idea of what or when something else will drag me down.

I believed that PAH would be the one to take me out, now I believe it will be Sclaraderma!

I too loved my work took me all over the country. I had my own management consulting firm, before that my own yacht brokerage firm. Always active. Of course I am now 77 and retired but was still very active.

Good mental health is a must and we need to focus on that. Thank you for your column! Warm wishes, positive wishes to follow you.
Carol

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debra holland avatar

debra holland

when reading your column, i feel like you were writing about me. i too was extremely active. i worked out at the gym for many, many years. I lifted heavy weights, ran 18 miles a week and raised 3 kids. my 32 yr. old daughter and 23 yr. old daughter no longer live at home, but i am still raising my son, 17. I also cleaned houses and worked for my husband's family trash co. my husband drove and i hung off the back and slung trash. we did city work and were a private hauling co., meaning we had no limits on how much trash could be picked up or where they had to place it for pick up. got trash wherever we were told to get it. it is alot tougher than twnshps. that have curbside service with a limit on how many cans you can put out. A lot of our customers used barrels and dumpsters which we had to roll out and hook up to the back of our truck. I loved the work. I was very strong with a very toned body and muscles that I earned from all that physical work. I hung from that truck anywhere from 8-11 hrs. on a work day and afterwards went home emptied the truck, then went home to take care of my kids I was very proud of my physical strength and got lots of comments on it. 8 years ago I was diagnosed with skin lupus and sjogren's. I was able to work on the truck-yet. I even made it back on the truck after having 2 spinal surgeries on my neck. but 61/2 years ago my world turned upside down! At a routine visit with my rheumatologist, i I told her about some things that were going on with me for awhile, but was happening gradually , so I didn't realize for awhile that it was anything serious. I came to the realization finally when after a couple of years of choking on my coffee{we used to laugh about then}, grape and apple skins, I was watching tv with my husband and started choking on my spit! that was extremely scary! I can no longer work on the truck or something else. We just started our own trash hauling co. recently with our son and I am so afraid of not being able to be of any help to them. It's scary enough to be starting this buisiness

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debra holland avatar

debra holland

when reading your column, i feel like you were writing about me. i too was extremely active. i worked out at the gym for many, many years. I lifted heavy weights, ran 18 miles a week and raised 3 kids. my 32 yr. old daughter and 23 yr. old daughter no longer live at home, but I am still raising my son, 17. I also cleaned houses and worked for my husband's family trash co. my husband drove and I hung off the back and slung trash. We did city work and were a private hauling co., meaning we had no limits on how much trash could be picked up or where they had to place it for pick up. We got trash wherever we were told to get it. It is a lot tougher than township work that only has curbside service with a limit on how many cans you can put out. A lot of our customers used barrels and dumpsters which we had to roll out and hook up to the back of our truck. I loved the work. I was very strong with a very toned body and muscles that I earned from all that physical work. I hung from that truck anywhere from 8-11 hrs. on a work day and afterwards went home emptied the truck, then went home to take care of my kids I was very proud of my physical strength and got lots of comments on it. 8 years ago I was diagnosed with skin lupus and sjogren's. I was able to work on the truck-yet. I even made it back on the truck after having 2 spinal surgeries on my neck. But 61/2 years ago my world turned upside down! At a routine visit with my rheumatologist, i I told her about some things that were going on with me for awhile, but was happening gradually , so I didn't realize for awhile that it was anything serious. I came to the realization finally, when after a couple of years of choking on my coffee{we used to laugh about then}, grape and apple skins, I was watching tv with my husband and started choking on my spit! that was extremely scary! I can no longer work on the truck or anything else. We just started our own trash hauling co. recently with our son and I am so afraid of not being able to be of any help to them. It's scary enough to be starting this business at our age(54&56). I cry a lot! I feel scared and also very, very alone!

Reply
Amy Baker avatar

Amy Baker

Oh my dear sister-in-arms, how I can understand your pain. And the pain isn't always physical, is it? I have struggled with finding my self-worth amidst all this turmoil. Please know, you are not alone. I know it feels that way. I know it can feel like you are lost but you are not! We are here for you. This RARE community comes together. I am sending you lots of love and warm, positive thoughts!!

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