Uncertainty is part of life, but as human beings we do our best to create as much certainty as we can for a sense of security and peace of mind. For those of us who live with one or more autoimmune conditions, one uncertainty we deal with is that we never really know how we’ll feel. There are good days, and there are bad days.
It’s easy to feel alone and frustrated when you’re not feeling well, and unable to keep up with your own life at times. I am sharing my own challenges and experiences below to help others who struggle with similar issues feel less alone, and to help increase awareness about what it may be like to live with autoimmunity.
1. The F-Word – Fatigue
A symptom common to basically all autoimmunity is fatigue that is beyond tired. Your body feels like lead and you need to lie down. This fatigue is sometimes worse in the mornings and you need to ease into your day, only reaching peak productivity later in the day when others are ready for lunch.
During a flare, which is when your immune systems is extra ramped up and stealing even more of your energy than usual, making you flat out tired. A low-grade fever and a foggy mind may be companions to the fatigue, this triple threat makes sure you get nothing done! All you can do it surrender to bed and rely on family members, frozen emergency meals, or take out, to feed yourself and the family. Tomorrow is another day.
2. Fear of Making Plans
You’ve had a stretch of good days, or weeks, and almost feel like your normal self. It feels great to feel good and you make plans to travel, host dinner parties, go to events, well normal stuff people do, only to dearly regret it as the day comes if it’s a bad one…
Once this has happened as few times, this thing I call “fear of making plans” set in and you hesitate to make commitments since you don’t know how you’ll feel when the day comes. This fear can take a toll on your social and professional life. The solution I have come to accept is to go ahead and make plans and accept that you’ll just reschedule or cancel if needed. That’s it.
3. Feeling Guilty
I’m not particularly good at asking for help, and it’s very frustrating not to be able to do what I normally should be able to do myself because I am pacing myself (to avoid a flare), or because I am not feeling well. Most autoimmunity is invisible, or not obvious, and you don’t look sick. It is easy to end up second guessing yourself and wondering if you’re just lazy… You feel guilty for not being able to consistently do “your share” at home or at work. This is a tough one and requires a large dose of surrender and recognizing your value for who you are, not what you do.
What is Autoimmunity?
Autoimmunity is when your immune system attacks your own tissue, and where that tissue is located in your body gives the conditions it’s name. Psoriasis if it’s your skin, rheumatoid arthritis if it’s your joints, Hashimotos thyroiditis, if it’s your thyroid, and so on.
As women, we are much more likely than men to get an autoimmune disease. Autoimmune disease impacts approximately 8% of the population and of those almost 80% are women. This means that approximately 1 in 8 women have an autoimmune condition. The real number may be even higher since it often takes a long time to get a diagnosis. Mary J. Shomon, the author of “Living Well with Autoimmune Disease”, coined the phrase “Super Symptoms” for symptoms shared by most autoimmune diseases. You can read more about those symptoms in my post on Autoimmune Super Symptoms.
Keyword is Pacing
Whether you have a diagnosis or not, doesn’t matter. If you struggle with energy, focus and other symptoms, the key to living life well, at least for me, is to know my limits and pace myself, especially when I’m feeling good to avoid a crash.
While pacing yourself, and not taking on too much, I suggest you use this time to develop your inner life, or wisdom practice. Find a meditation you resonate with, practice deep breathing, do automatic writing (where you just let words flow on to the page bypassing your mind), etc. Just spend time being.