Chronic illness isn’t new to me. I grew up with an incredibly strong mother living with Lupus/Fibromyalgia/Arthritis. She even had both hips replaced at the same time! I know, what a badass right? One of the earliest memories I have, is trying to swing from my mom’s bed trapeze (the aid to help her sit up in bed). And quickly being told, sternly, that it was not a toy 😛. As a child, I saw glimpses of strength and resilience whenever my mom would walk without an aid, or walk instead of using a wheelchair at an amusement park. I saw my mom have good days and very bad days and because of that, I believe it contributed to developing the strong empathy I have towards others today.
Now, if you were to ask me before I got sick, if I understood chronic illness, I would have said I absolutely do. But now, as I currently live with my own chronic illnesses, I would have to say that even if you know someone living with chronic illness, there’s a really good chance, you’re not getting the full picture.
There are so many things chronic illness warriors do not share, either out of difficulty or embarrassment. As an adult living with illness, I see that my mother, like any mother, didn’t want to burden her children with all of the other aspects that come along with illness.
So it is important to remember that not everyone feels comfortable being open about everything, especially illness. Just because you don’t “see” a certain part of a person’s life does not mean it isn’t there.
See below for some examples of things chronic illness warriors may not want you to see or know:
1. The effects on bladder, bowel + sexual function
Unfortunately, my illness revolves around these functions daily but other chronic illness warriors may begin to get symptoms that effect these areas such as, constipation/diarrhea (from pain medication use), painful intercourse and bladder issues. For me personally, I don’t talk much about the time I spend in the bathroom some days. From being stuck on the toilet with numb legs and being in tears and/or having to take 3+ baths a day to get relief. My Interstitial Cystitis flares hinder me from living my life. No 30 year old should be spending all their time in the bathroom. I wish people understood how exhausting and how impactful these bathroom trips are.
2. Calculating every move
People don’t understand the amount of energy that goes into preparing to leave the house. I can’t leave the house now without a bag full of my ‘essentials’: heat pad, ice packs, donut pillow, pain meds, bladder friendly snacks etc. On top of that, I have to calculate my every move to ensure that I don’t overdo it. And even with all that thought, it can still lead to an awful flare-up. I can’t sit, walk or stand for long periods of time or else I will flare, so I have to take that into consideration when trying to live a normal life. Going to see a concert, or a trip to a mall is a huge feat for me these days.
3. Brain fog/Cognitive function
The fatigue and brain fog from chronic pain or medication is something many of us are too embarrassed to admit. We are constantly scared of sounding ‘stupid’ or not understanding the simplest of conversations. A lot of the time I know what I want to say but the right words don’t come to mind. I tend to use a lot of descriptive words when trying to explain what I mean. Most people don’t know this, but that is why I’m more closed off now.
4. The grief you feel for the ‘old’ you
The grief for the loss of basic abilities + health, and adoption of all these limitations, is indescribable. I find myself feeling grief in random moments, such as when a friend tells me about all of the fun things they have been up to, or when I have to ask for help when getting something from a shelf. Or when I have to say no, or hit “decline” on an invite, again, to an evening or day of something fun and nourishing that’s happening. It’s a constant mental struggle to keep yourself in good spirits, when you know this is your new reality.
Fear of making the wrong choice. I am a complex case and me and my medical team are making it up as we go. I always think, what if all I did was make the pain worse? I want to keep trying new treatments to see if they will help me get relief, but I have crippling fear that it can potentially make my pain worse or create new symptoms and that I will never get back to my current pain level again. I try to put on a brave face but I am not as brave as everyone thinks I am.
The simple things that a healthy person wouldn’t second guess, like doing groceries or meeting a friend can knock me out for days. This is one aspect of my illness that I struggle to keep hidden. I want to live a happy + normal life, but it’s hard to do anything when you’re constantly running on empty.
7. How much pain you’re actually in
Because I don’t moan or say ‘ouch’ constantly and because I look ‘normal’ to some people, I must not be in pain ‘all of the time.’ If you do ask, I might say, “I’m in pain”, or “I’m feeling rough today”, but that can sometimes barely touch how I’m actually feeling in that moment. It doesn’t come close to describing the zaps going off in ten different areas of my body, the deeply painful debilitating pain in my pelvis, the sweat inducing pain in my abdomen, the sparks shooting up my rectum, the flu-like malaise that never disappears.
When you’ve been in pain every day for over 10 years, you get used to putting on a smile or ‘normal’ face and grin and bear it. It’s easier somehow to just smile and not show it as opposed to constantly showing it. If we did, it would also be even more challenging mentally and stress can make the pain feel worse. So it is easier for our mental health if we just act ‘normal.’
8. Insomnia/Lack of restorative sleep
The sleepless nights from the pain take a toll on your body. I am so very lucky to be able to take time off work to focus on trying to heal and feel better. However, there are SO many others suffering, where this is just not an option. I truly don’t know if I could function if I had to go back to work right now. I get up every night 1-3 times (average lately) to go pee. Because of this, I am unable to get the rest my body and mind so eagerly need. I can’t imagine having to show up to work and perform as well as my co-workers while still being in pain and exhausted. So to everyone still balancing work, school, family life on top of their illness, hats off to you. You are a warrior.
Guilt is a big one and it comes in so many forms. The guilt can be from limitations, not being able to pull your weight, to cancelling plans… again. One that I have been feeling lately is being active on social media. If I post of photo of me smiling and a face full of makeup, I begin to feel guilty, thinking I shouldn’t share that or everyone will think I am “faking it”. It’s a ridiculous thought, I know. But it’s real, and it’s there. I think it stems a lot from constantly trying to prove to insurance that I am “disabled enough” under their standards and the years of doctors dismissal.
10. Living with chronic illness is a part-time job in itself
Except the pay is lousy, the hours suck and the stakes are incredibly high. Having a chronic illness is its own part-time job that consists of administrative and detective work. What hours aren’t spent at actual doctor appointments getting care or testing are usually dedicated to requesting and tracking down referrals, prescription refills, trying to find out what the test results mean, and soliciting follow-up medical advice from a multitude of specialties. This all takes away from the time I can and should be devoting to taking care of my health.