This blog post is a bit different than my usual ones. I was asked to write about living with, and moving through, illness. Instead of writing it on a good day when I would be stronger and more optimistic, I’m choosing to write it on a bad day, a day when I’m struggling with it all. Because that’s when it’s most real, that’s when others can most relate to what I’m going through and how I feel.
Let’s start with a little background. I’ve been battling several autoimmune diseases for 26 years. That is how I lost my hair. I have been diagnosed with Common Variable Immune Deficiency, Autoimmune Thyroiditis and Idiopathic Urticaria and Angioedema. These particular illnesses do not affect me all the time but when they do, I am debilitated. The episodes usually last a long time – once for 18 months, another time for 2 years. I am in severe discomfort, pain, and just as a bonus, I look massively swollen in various places, like an amateur Picasso. The fatigue is restrictive.
Autoimmune diseases are kind of like cats. If you get one or two, you will probably get 3 or 4. I also developed Ulcerative Colitis and next week I am packed with appointments to check out my esophagus and a lesion on my retina that could be melanoma. Other than doctors’ appointments, I am stuck at home, often in bed, and it all wears me down emotionally. The frustration and depression can get pretty bad. By now, you’re probably thinking, “What does this have to do with wigs?” As I mentioned, I lost all my hair due to these illnesses 26 years ago. I have been wearing wigs ever since but I only really embraced it this past year. I told everyone that I wear wigs, I started social media accounts just for wigs and I was just about to start filming wig reviews when…BAM!
Relapse. I was trying on wigs, taking photographs, and I couldn’t believe what I was seeing. In the span of a week, my face was twice the size. I looked like I had gained forty pounds in a week. Then the tissue swelling started so that one eye was bigger than the other, or maybe half a lip was swollen, or my cheek looked like I was storing nuts for winter. What was I going to do? I wanted to hide away, not let anyone look at me. Then I remembered that I had felt that way before – not just when I was sick but for the 26 years I wore wigs. I spent that time ashamed, embarrassed and avoided a lot of things. But I had just gotten over that, told myself I was done punishing myself for things that were not my fault, So why was I doing it again?
The wig community is an amazing place. On the surface, it may look like a lot of selfies and talk about hair color, products, and styling tips. But it goes so much deeper. The wig groups on social media are where I learned to stop punishing myself and embrace the freedom that wigs gave me. The groups are filled with people who are battling illnesses and/or fighting for their lives. They are brave, strong and resilient. Rarely will you read a post filled with self-pity or hopelessness. Instead, you read about people making the most of their lives, helping others deal with hair loss like they had to, and there is so much love, support and friendship. In my short time in the groups (less than one year), I’ve watched women evolve from thinking they could never go out in public wearing a wig to not only doing that, but telling everyone and showing us photos of their bald heads! These women are my heroes! So why in the world should I be ashamed to post a photo with a swollen eye or cheek? It isn’t a beauty contest. The groups are about self-acceptance and coping. So I put on the wigs, I took the pictures, and I posted them online. I explained in the posts that I was sick and that my face looked like I had gained forty pounds. I’m sure every person who had ever been on medication such as steroids understood completely.
Over the past few months that I’ve been ill, I haven’t posted less than usual. I have adapted my activities to what my body can handle. Here are a few tips on moving through illness:
1. Do what you can when you can for as long as you can. Every day I may have a good hour or two where I look less swollen and have a burst of energy. That’s when I try on wigs and take pictures. When I feel tired, I stop and rest. I’ve even made a few videos that I have shared. I like to be open and honest about what I am going through because if I can help anyone else, that makes it worth it.
2. Try to be positive but realistic. I am a student of positivity and deliberate creation but I am not a fan of toxic positivity. I am optimistic but I am human and I have bad days, like today, where I struggle and feel lost, like I want to give up. But I don’t. I’ll be stronger tomorrow or the next day or the day after that.
3. Have a support network. I stay away from people who offer platitudes such as “it could be worse” or “this too shall pass” or “God doesn’t give you anything you can’t handle.” Ugh. Instead, I surround myself with people who cheer me on but also validate my frustrations and sadness. My friends, online and in real life, distract me, make me laugh, and tell me to go rest. Many of them have their own battles. We help each other. It is not a contest; it’s a community.
4. Do things differently. Technology is a wonderful thing. I have not been able to go to my weekly Abundance group in 2 months. So I took a 4-day training course online and became a Certified Infinite Possibilities Trainer. Thank goodness for Zoom! If I’m too tired or dizzy to type, I dictate my writing into my phone or computer, and edit it later. I am usually a “if I start something, I finish it” type of person but my energy levels are not allowing that so I have had to learn to work in short shifts and rest in between.
Doing things differently is so much better than not doing anything because I still feel productive and that keeps me from feeling useless. I may be extremely ill and almost house-bound but I am running my online shop, Benny & Me Gifts that Give Back, raising money for animal charities, writing blog posts, reviewing wigs on my social media accounts, studying abundance and manifestation, chatting with friends, playing with my cat, Midi, writing essays for my Patreon, Rheality, reading mystery novels and looking for any other ways I can do work from home.
We do not have control over everything in our lives, but we do have control over how we react and respond to events. We can say “Poor me, I’m sick. I can’t do anything” or we can say “Yes, I’m sick but I can do this and this and that.” Do what you can, with what you have, from where you are. This blog post may be the only thing I do today but I did it – and I did it wearing a pretty wig!