I wish I had a dollar for every time I thought, “No one understands me!” I’m sure I’ve yelled it out loud a few times too. The loneliness of feeling misunderstood can be crippling.
Living with an autoimmune disease, especially one that allows you to maintain the guise of a healthy appearance, can cause you to question your own sanity. It’s extremely difficult for others to understand what you’re dealing with on a daily basis when you appear to be fine. I am in a much healthier, happier place today, but I’ll take a quick jog down memory lane to give you an idea of what it can be like to live with a chronic illness while trying to blend in to the social “normalcy” around you. If you are a fellow autoimmune warrior, this may sound familiar.
I have had significant others and even close family members laugh in my face when I forgot what I went upstairs for within a matter of 60 seconds. Other times they yelled out of frustration. Friends once asked why I couldn’t just “suck it up” when snow skiing became too painful due to Raynaud’s Phenomenon. I was almost fired from a part-time lifeguarding job in high school for having to continually get subs for my shifts while I was undergoing treatment for multiple digital ulcers. I have been accused of being lazy when I couldn’t get myself out of bed to make it to the gym. I was called an ice queen by a significant other when I was in such a hypothyroid state that my sex drive was practically nonexistent. To top it off, I didn’t feel especially sexy when my hair was falling out from the subsequent hormonal imbalance. And then there’s my personal favorite, being asked “Are you sure it’s not just in your head?” by friends, family members, and even medical professionals.
I used to have a chip on my shoulder about the entire situation. I was so angry that anyone had that audacity to accuse me of being crazy or question my motivation to participate in physical activity. When people laughed at me for forgetting simple things, I cried. I cried a lot. There’s no sense in pretending that it didn’t affect me. It affected me deeply. But this happened because I was taking everything personally. Rather than pausing to understand that the individuals expressing their concerns or questioning my actions (or often lack thereof) did not understand what I was dealing with, I lashed out by embodying the very persona I was accused of being. Paige, the ice queen, was born. Uneducated comments or questions were met with witty, sarcastic responses. My jokes were actually a cry for help, but I gave a convincing enough impression most of the time that very few people saw through it. If I wasn’t manipulating situations in an effort to feel wanted and accepted, I was putting up a front of just not caring.
Trust me, I cared. We all care.
I am NOT sharing the details about coping with autoimmunity to make anyone feel sorry for me. I have recovered from a longstanding role of playing the victim. I don’t feel sorry for myself and I do not expect, let alone desire, for anyone to feel sorry for me. The moments of being fawned over for having been dealt a less than perfect deck can be addictive, but if you continue to seek them out you allow your illness to define you. I am not Paige, the girl with an autoimmune disease. That was the girl who turned to disordered eating and perfectionism to chase the seemingly elusive state of happiness and fulfillment. I am just Paige, and that is enough on its own. I don’t need a crutch anymore because my disease has pushed me to appreciate the little things I may have otherwise felt entitled to. It has also pushed me to share my story and speak the truth about an issue that so many people suffer in silence.
Individuals with autoimmunity, whether it’s a relatively minor condition or something as debilitating as Multiple Sclerosis, do not want your pity. What I expect, and what I hope most others would expect and appreciate from others, is simply kindness and compassion. Not everyone may understand what it is like to experience brain fog, lack of muscle control, anxiety, painful constriction of their blood vessels, chronic pain, lack of sex drive, etc (I would go on, but you can Google autoimmune symptoms any time). What everyone single person can relate to, however, is what it feels like to be lonely. Being singled out for issues that are outside of your control is alienating. It can lead to depression and unhealthy coping mechanisms.
Loneliness is a perception, and a very subjective one at that. Therefore regardless of how much compassion and kindness is bestowed by others, it ultimately lies with the affected individual to make a change. I realized, with the help of therapy and an open mind, that the only person whose perspective and actions I have control over is me. I could stay angry, let my anxiety and depression keep me from living my life to the fullest, and let my illness cripple my potential. OR I could look for a better way. I chose the latter and I’ve never looked back.
So, for those coping with their own chronic illnesses, these are the 5 things I’ve focused on to recover from playing the victim, stop alienating myself, and learn to be more forgiving and understanding of the words and actions of others. This may also be helpful reading for those who live with/love/support/or just routinely interact with someone who is a #spoonie.
No One Understands Me Recovery Step #1: Support System – The people you surround yourself with have a profound impact on your state of mind and subsequently the quality of your life. Make sure you have a strong support system. Quality trumps quantity here, as it should almost everywhere in your life. This doesn’t mean these individuals will not say something on occasion that offends you or ask a question that stirs up negative emotions. What it means is that the people in your life who you keep the closest should be people that you trust to have your best interest in mind. This should be reciprocated by you, of course.
No One Understands Me Recovery Step #2: Have Your Own Back – Your support system is crucial, but the most important cheerleader in your life is you. Always. You need to value yourself, practice self-compassion, and know, with conviction, what you stand for and what matters most. This applies to speaking your mind in a physician’s office, setting healthy boundaries in your relationships, and taking time to decompress and take care of yourself when needed.
No One Understands Me Recovery Step #3: Learn & Absorb – According to Einstein, “Once you stop learning, you start dying.” There are a multitude of books available about the root cause of autoimmune disease, how to have a successful relationship with a partner who has an autoimmune disease, the mental and emotional issues related with these illnesses, and what alternative treatments may help you. I am not telling you to go read every book ever written. Been there. Done that. It only creates more stress which is what you need to be reducing in your life. I am telling you to keep an open mind and explore what’s out there that speaks to you. Some topics may resonate with you. Others may not. I personally connect best with video and blog posts since I am a visual learner. If someone grabs my attention and I feel that I can relate to them, THEN I might order one of their books or sign up for their program. For example, tuning into the free annual HeyHashi Healing Summit exposed me to several experts in the autoimmune field that I now follow. I have changed my diet and made some adjustments to my lifestyle as a result of what I’ve learned, and I’ve shared these videos with my family to help them understand my illness.
No One Understands Me Recovery Step #4: Educate – People cannot understand what you’re going through if you never talk about it. Try not to get on a soap box and share every detail of your disease to the point that it sounds like complaining or attention seeking. This is when the illness starts to become your identity. However, staying silent is not ever going to help you. Open up to your family or a close friend if you’re struggling with your illness, especially if you’re struggling emotionally. Write about it. Get involved with a nonprofit that raises money for research or patient support. Volunteering, providing my name for research journals, and sharing my story on this blog has been unbelievably therapeutic. It’s also improved my relationships since it’s pushed me to be more vulnerable.
No One Understands Me Recovery Step #5: Have FUN – You have to make time for playful activities in your life. Your sanity depends on it, especially when your life revolves around rather serious subject material. Even if you’re stuck in bed, you can watch a funny movie or give a close friend a call. I’ve laughed so hard my stomach hurt while on the phone with old friends. If you’re able to get out, go bowling, go for a bike ride, go to a comedy show, meet up with friends for dinner, or go rollerblading (yes, I still own a pair and it’s just as fun as it was in the ‘90s). Go anywhere and do anything that makes you smile… or better yet, makes you laugh. It is exponentially better than any pill or drink at making you feel better.
I could make this list a lot longer, but these 5 actions far outweigh any of the others I have taken. Loneliness may not sound very threatening, but according to the New York Times it “can impair health by raising levels of stress hormones and inflammation, which in turn can increase the risk of heart disease, Type 2 diabetes, dementia, and even suicide attempts.” The article I am referencing doesn’t even touch on autoimmunity, so the problem is much larger than my little post describes. I hope these steps are as helpful to you as they have been to me. Like I have shared multiple times, it’s the little changes implemented over the long-term that have the most lasting effects.