Living with an invisible illness can be tough. Many look at my outward appearance and don’t realize how much I deal with. From the physical, mental and emotional aspects of my disease - there are many ways that I internally suffer. I hate to dwell on the negatives, but these are the realities of living with psoriatic arthritis.
These are 5 ways I suffer, but you may never know:
1. The physical and emotional anguish of managing chronic pain
You can't see it, but with psoriatic arthritis, comes joint pain. It can make daily tasks a whole lot harder. One day I may feel well enough to exercise, walk a 5k or spend the whole day out with friends. While the next I can have difficulty doing my hair, using my hands, or walking. If I don’t properly manage my condition, and my inflammation, my pain can be debilitating.
There were years that I relied on pain meds to help control my pain. Pain can affect every part of my life. My energy is severely impacted by pain and my mood can be completely altered as well. It’s a lot to deal with pain day in and day out. It takes a toll on you mentally, emotionally and physically.
2. Stress of managing my condition
There are many different stressors in managing my condition. I have to continuously worry about what I'm going to eat. If I’m pushing myself too far or if my activities are just the right amount. Have I exposed myself to toxins that will cause me a flare? Is going to the gym tonight going to make me feel better or make me feel worse? There are always so many questions in the back of my mind. I never have a day off from living this chronic condition.
In addition to the stress of managing my autoimmune arthritis, I’m always worried about “acting well” and the perception others have of me. With an invisible illness, people often don't understand why I don't feel well. While I may feel ok one day, I might be laid up in bed the next. Many times I’ll have plans and end up having to cancel. When I do, I look like a flake and it exacerbates my stress levels. I worry about what my friends think and if they’ll continue to invite me out. I know they don’t understand and I can’t expect them to.
3. Longing of wanting to be 'Normal'
I just want to feel normal. Normal to me would be living live without having to second guess everything. I want to be able to go out and not have to worry about my condition or how I will feel tomorrow. I want to go and relive my college years where I didn't have a care in the world. I want to be able to go to a restaurant and not have to give specific directions on how to prepare my meal. I want to be able to eat pizza and drink beer with my boyfriend. Now I'm bogged down by supplements, medication, doctors appointments, treatments and more. I don't want to have to worry about these things all the time.
4. Annoyance of being asked 'stupid questions'
This one may seem really petty, but I get really frustrated when I get asked (what I deem) as stupid questions. And I know I shouldn’t think of them like that, because they’re not being asked out of spite or meant to be rude. I just get annoyed answering the same things all the time and I hate being asked questions that I feel others should just know.
What are examples of these questions? When I wasn’t working, I dreaded when people would ask me when I thought I’d get back to work. I know this wasn’t meant to cause me stress, but it would stress me out because it was out of my control. Of course I wanted to get back to work, but my health was preventing me from doing it.
Another example is when friends or family members ask me why I don’t feel well? They’ll ask if I possibly have the flu or maybe I’m coming down with a cold. Many times I just want to scream “I have a chronic condition! I have flare ups! It’s my psoriatic arthritis, not the flu or a cold.” So many in my life don’t understand that it’s something that will never go away. I know I shouldn’t get upset, but it’s another factor that’s out of my control and triggers me.
5. An internal battle with myself
The biggest thing I struggle with is not wanting to have a chronic condition. It’s a huge internal battle I face day in and day out. I don't want to be sick. I don't want to have a condition that hinders me for the rest of my life. I don’t want to have to deal with pain and medications and modifications.
I struggle with it a lot - especially when I have flare ups. I blame myself. What did I do wrong? What did I eat that I shouldn’t have? Why did I do that to myself - I know better. It’s so easy to get caught up in a blame circle and put a ridiculous amount of pressure on ourselves.
Although I do suffer with these things, I do not want to negate that great life I live.
At the end of the day, I’ve come to terms with having my condition and I’ve truly moved on to living my best life.
Each of these sufferings can be overcome and managed to help move past. Whenever the negative train does come chugging into the station, I reach into my toolbox to overcome and focus on the positives. Practicing yoga, breathing exercises and meditation are two ways that really help lift myself up. Educating my family and friends on the ways they can help me is another way I can move past these items.
I may have to deal with these things on a daily basis, but they make me stronger. And for that, I am grateful.