14 Reasons Working Is Difficult When You Have Chronic Illness
Being on disability is no walk in the park. It’s a struggle both emotionally and financially. When you are already dealing with a battle inside that no one else can see or feel, it’s just added stress when your spoons are all used up.
This list is to remind myself to not feel guilty or to lose hope for finding something I can do. It is also to show anyone who questions why a 31-year-old female cannot work but looks healthy or who occasionally sees me out but can’t tell I am in pain and intense fatigue as there are no visible signs of disability or illness.
I am on disability because I have rheumatoid arthritis and osteoarthritis, and along with these debilitating diseases comes the emotional and mental struggle of anxiety and depression, which makes basic everyday life difficult enough already.
Brain fog and pain make it difficult to concentrate. Add in side effects of medications that can cause cognitive dysfunction and sometimes I just really have trouble thinking. The cognitive dysfunction caused by my rheumatoid arthritis makes my thoughts and actions feel as if I am moving or thinking through drying cement or there is an invisible wall up stopping my mind from moving forward. I am often confused and my memory is hazy, especially if I am over-tired. Rheumatoid arthritis makes it difficult to think, learn, remember and perform various mental tasks on a daily basis for me.
Not true: I am “stupid.” I am a “dumb blonde.” I am “high.” (OK, maybe a little, but it’s because I strongly consider marijuana a natural pain reliever!)
Sitting hurts after a short period. Standing hurts after a short period. Laying down hurts after a short period. Arthritis is painful and there are about 360 joints in the entire body that may be hurting. Pain leads to a number of issues including painsomnia and swelling from inflammation. It makes movement difficult. Ouch. I am constantly squirming in pain, and over-using my joints is pretty easy when they are in a flare.
Not true: The pain is located only in my joints.
I live the life of a spoonie and we are a community of people with different chronic illnesses. When you are a spoonie, your energy is limited. We describe ourselves as spoonies to help others understand our energy levels. A spoon is an indicator for our energy, so say we start off with 10 spoons a day (whereas a healthy person has unlimited spoons). Take a spoon away for everything you do like shower, prepare food and eat, grocery shopping, etc. Some activities take more than one spoon and every day is different. Once we are out of spoons we have no choice but to become one hell of a tired, hot mess and that can happen any time during the day. When I do have a bit more energy I try and catch up on everything else. I find between the pain and fatigue I move at what I call arthritis speed.
Not true: I am “lazy.”
4. Flare Triggers
What I went to school for is too much for my body now. I have to make sure I do not overuse my joints, otherwise they become sore and I can further damage them. I can’t lift anything heavy and I can’t stand or sit for very long. The majority of my pain and issues are in my neck, hands, left hip and right knee. I experience pain in these joints pretty much 24/7 and overusing them is easy. Something as simple as scrubbing the shower can irritate them.
5. Stress Is a Major Trigger
Stress is a major trigger that can cause a person’s health to go funky. Add in already compromised health and it can get worse. It’s pretty easy to become overwhelmed when chronically ill and being on disability.
Not True: It’s “all in my head.”
6. Emotional Challenges (I am still adjusting to being chronically ill.)
At first disability was like a vacation I really needed. My body was broken down from years of being an esthetician, especially my hands and back. I wanted to care for my son more and I still consider being able to have the time to dedicate to my son a blessing. I knew I had to say goodbye to my beloved job and find something new, but as simple everyday tasks became more and more difficult, the possibilities of what I could do for work started to lessen drastically. This has led to feelings of being a burden, guilt and isolation.
Not true: I am being “dramatic.”
7. Side Effects
Glorious, oh glorious side effects. They can range from a number of different experiences like night sweats, diarrhea, nausea, depression and mood swings to suicidal thoughts. We’ve all seen the infomercials of pharmaceutical drugs – the lists are always so long, weird and scary. When chronically ill, you usually have to go through a wide array of medications until you find the right one that will work for you. I’ve tried over a dozen and am still searching for the right ones. This takes years for some people. I am at two and a half years, still a baby to being chronically ill compared to many. I’ve known people who’ve waited for close to over six years before finding something that works. Sometimes the side effects are as bad as the disease but I want to fight like hell and beat these diseases.
Not true: How damn happy the people on those pharmaceutical drug companies are.
8. My Health Care Routine Is Already a Full-Time Job
Between all the doctor appointments, physio, yoga, exercise, healthy meal preparation and everything I already have to do as a single mother, my spoons are already overused. I have to put my health and my son as number one. And I need time to rest and relax! Like a lot of time! It’s pretty boring.
Not true: I’m just “making excuses.”
9. How Would an Employer Understand? Who Would Even Hire Me?
Seriously, I would love to find a job where they don’t care if for days or weeks at a time I need to rest or I’ve got a pile-up of doctor appointments that week. Who doesn’t mind my constant mistakes caused by that pesky cognitive dysfunction or my slow and flaky arthritic speed? How would they understand how much I already have on my plate?
Not true: I don’t want to work.
Trust me, I do. It’s pretty boring watching daytime television and being isolated. Not working results in me feeling like a burden, guilty and useless. It’s not a wonderful feeling. I’m also pretty damn broke. I would love to find something I could excel at while chronically ill. I am always hopeful.
10. Every Case Is Different
There are over 100 types of arthritis, all ranging in different cases and degrees. Mine was already bad enough that my rheumatologist referred to me as a difficult and severe case. Just because you can’t see that severity doesn’t mean it’s not there.
True: Just because you know someone else with arthritis who can work doesn’t mean every case is the same.
11. I Have a Severe, Debilitating Disease
Even if you can’t see it doesn’t mean it’s not real. I am not “too young” for it. There are 4.6 million Canadians alone with a form of arthritis, and that’s only those who have been diagnosed. Approximately 350 million people worldwide have arthritis.
Not true: Everyone has arthritis.
If you say that then you haven’t really been listening to what I’ve been saying.
12. I Devote What Little Energy I Have to My Child and Raising Awareness When Not Taking Care of Myself
I am convinced my care for my son is driven by my love for him. It must be the endorphin of my love for him that makes me strive through arthritis to be the best mom I can be. My passion for awareness drives me further.
Not true: I want a man to pay for me.
13. My Doctor Suggested It
The first time I met my rheumatologist she told me she would sign any form I needed. I knew she was hinting to me to take disability. I asked her if I should be on disability and she, as another mother and someone treating the disease, told me I had enough on my plate. She was absolutely damn right. Being chronically ill is a battle. It’s a struggle to get by on disability but sometimes you have to put your health first. Don’t ever let anyone make you feel guilty for knowing you are too sick to work but look capable of it. Not everyone gets it and sometimes it’s a surprise to us who won’t.
Not true: I want to “ride the system.”
The system is there for a reason: to help people like me.
14. Not Every Day Is the Same
Every day with my illnesses is different and in probably some way difficult. The whirlwind of chronic illness is already hell to go through.
Not true: I am a “flake.”
15. I Need Time
I need time for my body to heal, adjust, decline. I am on a new journey and a new path in life, a little too early. But I have not lost all hope.
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