Embarrassment and Chronic Illness
What if you’re embarrassed or in denial about your chronic illness? I receive this question all the time. What do you do when you’re embarrassed by your body’s ailments? What do you do?
Chronic illness brings about new insecurities that healthy individuals don’t have to battle, new circumstances and fears that have never crossed their mind. From knowing where the nearest bathroom is to fearing an accident, to feeling mortified over using a cane or dealing with the stares when a seemingly “healthy” person is in a wheelchair. What do you do?
I don’t think there’s a simple answer to that question. No coping mechanism is a one-fits-all thing. What works for some does not work for others. I was recently offered a cane by my rheumatologist. I am constantly offered the motorized scooters in grocery stores and I almost always say no. For me, using an assistive device is embarrassing. Sharing a bathroom in a dorm with three other people (the bathroom was literally in between the two rooms and connected them) was mortifying. Any flare up of IBS and I would run the showers 6-10 times a day when my flares were really bad. Try explaining that one to your roommates. It was not a fun year. For a while I refused to use the word “disabled.” I felt like I was giving in, like I was tarnished. There was this sense of shame, so much anger and resentment towards myself for getting sick. I resented my body for being twenty steps behind my mind.
It took months for me to realize that it is more important to give my body a break than care about my pride. And when you realize your body is more important, that pride becomes less of an issue.
If I don’t absolutely have to use a scooter, I don’t. I give myself a challenge and think of doing a grocery shopping as exercise for my body. But if I know I’m not in a position to challenge myself, I don’t. If I make it through the store without using a scooter, I applaud myself for the exercise and strength it took to do so. If I don’t make it without a scooter, I applaud myself for having the courage to put my pride and embarrassment aside and do what is best for my body. I put a positive spin on either circumstance to negate the embarrassment or insecurity. Changing the way I lived my life and my thought patterns were key:
- Positive People. I surround myself with people who understand and support me, no matter what state my body is in. This is so crucial to coping. Toxic friends will make the shame, embarrassment and hard times harder. Surround yourself with people who love you, make you laugh, and can make light of your dark times.
- Be prepared. I carry half a pain killer with me for emergencies, my wrist brace for neuropathy (otherwise I go nuts and people must think really weird things when they see me scratching/slapping my arms to get the sensation to stop…), anti-diarrheal and anti-nausea medication with me. If you’re suffering from severe IBS, Crohn’s or Ulcerative Colitis, carry emergency supplies with you: a change of clothes, wet wipes, etc. Demand accommodations away from home if you know you’ll need them (i.e: a private bathroom/single dorm room) There’s a great tumblr blog with awesome vlogs that explores the embarrassment factor: A Girl With Guts.
- Seek out support. And I don’t mean in your health friends and family. Though they love you and you may confide in them, there is a difference when confiding in someone who goes through what you do. It is an invaluable tool, being able to connect and share with others in your shoes. Find a support group, start a support group, volunteer at a related foundation, or find blogs like Chronic Curve online and send the writer a message and ask them how they cope (have I mentioned how much I love all of your stories and messages?). Share your embarrassing moments with others who understand that are more recently diagnosed or less experienced with their disease— help them and in turn, help yourself. Connecting with others in person or online, learning to laugh with others over the embarrassing moments of chronic illness? What better way to combat embarrassing aspects of your disease(s) by making light of them with others who have shared those same embarrassing experiences?
- Step outside of your comfort zone. I absolutely am a huge supporter of therapy to learn coping skills. It is a place to vent, it is a place to be introspective and sort through those ugly emotions we all bottle up so others don’t see— most of us are physically crippled; exposing our emotional turmoil risks seeming emotionally crippled. And I have no problem saying that some days, I am emotionally crippled by my illness. But that’s what therapy is for, and when you can take that first step (it’s a hard one, getting counseling) you will have given yourself a priceless gift.
- Use resources. Consider reading different chronic illness books, if only to get another take on coping. Consider meditation and deep breathing exercises (extremely helpful) or writing exercises. Consider your religion or spirituality as a place to find peace, even music. Explore new things and find what works for you. When your anxiety level is climbing or you’re feeling mortified, find that peaceful place.
- Learn to be honest with yourself about who you are. You don’t always have to fake-healthy, and let’s be honest: most of us do it as to not burden other people. But don’t do it to fool yourself. Be mindful of your body, your limitations, and respect your body. Forcing yourself back into your old routine and lifestyle pre-illness is not going to make your disease(s) disappear; it will only cause you anguish.
- Do your best not to isolate yourself. Back to my positive people point— it is so incredibly difficult not to isolate yourself out of fear (among other things) of an embarrassing or uncomfortable social situation, but isolation will only add to depression and those feelings of shame. Illness is isolating enough as is. Surround yourself with people you feel comfortable around, first in small amounts or small, familiar social gatherings and slowly branch out at your own pace.
At the root of shame and embarrassment lies acceptance and control, or lack thereof. I by no means think it’s plausible that we’ll just wake up one day and accepted our chronic diseases and that will be the end of it. Acceptance is a process, one that never ends. It’s a journey and it is a different journey for each of us. There are days where I accept my situation for what it is and make the best of it, as if I resign myself to reality and relinquish my control. Using it to help others and do something positive with my life makes it worth while. Other days I am angry with the universe, depressed, and frustrated. I don’t think about what I’ll have to do if I’m worse in 5 years, I just focus on the next five hours. Find a good outlet for emotions that works for you, find something bigger than yourself to work on, and make your disease worth something. Remind yourself that you are the still the same person you were before your disease, only stronger, with new additions. Never lose sight of your self worth.
One day at a time.