Why I Haven’t Joined a Support Group for MCAS

Throughout having MCAS, I’ve had a few people suggest joining a support group. Which makes sense. No one, other than someone suffering from the same illness, could possibly understand what this is like. Especially when it’s an invisible illness (meaning you don’t look as sick as you are), that no one in your life has heard of. But I’ve resisted the idea of a support group. It hasn’t felt right to me, and up until recently I didn’t know why.

When you have an incurable illness that the medical community knows very little about, it’s terrifying. And this illness can look very different to everyone who has it (almost like a fingerprint). Which means in a support group, you might have someone who is able to eat more foods than you, work and have (somewhat) of a normal life. You might also have people who have been bedridden for years, eating the same two foods and not seeing any improvement.

Many people getting traditional treatment, are told to avoid everything that’s triggering symptoms, take medications that make them feel terrible (or worse) and told that this is the rest of their life. That is why I went with an integrative medical team who sees the root cause in this illness as a dysregulated limbic and nervous system and believes in recovery.

When you have an illness of this magnitude, you become very hopeless and vulnerable. And it takes everything you have just to get through the day. I have been filled with fear and doubt and have wanted to give up so many times. If I were in a group with people who had been sick for years with no progress, that would only intensify those feelings.

I didn’t know anyone with MCAS when I was diagnosed, but I knew it would help to talk to someone who had come out the other side. A little over a year into my illness, I met a fellow patient at my doctor’s office. We had seen each other a few times before, but this time we started talking. I learned she had been sick (as a young mother with three little kids) over ten years with MCAS, POTS and Lyme Disease (chronic illnesses like to come in groups), and had made a full recovery from MCAS and POTS. Looking at her, you never would have known. She looks ten years younger than she is--so healthy and vibrant.

We exchanged numbers, and she came to my house to visit, and we talked for four hours. Everything she said felt like I was talking to myself. It was so comforting and validating. I broke down from sheer gratitude. She told me how she went to several doctors and practitioners, getting various diagnosis with little results, until she finally started seeing my medical team (years ago, when they started their practice). That’s when everything changed and she started healing. This gave me so much hope, and it confirmed why I hadn’t joined a support group. I needed to talk to someone who had come out the other side, and she has been such a lifeline for me ever since.

There is nothing wrong with support groups. They exist for a reason. And for many people, they’re foundational to their healing. But I have always had strong instincts, and mine said “not right now.” This doesn’t mean I’ll never join a support group, but for where I’m at in my healing, it’s not a good fit.

I found it interesting my medical team hadn’t suggested joining a group. When I brought this up to my doctor, she said, “I don’t know if that would be good for you. You’re such a helper, you would be advising everyone on how to get better, taking their health issues on, instead of focusing on yourself.” How does she know me so well?

I’ve done my best to follow my instincts, but when you’re going through a traumatic event, like a serious illness, it’s hard to tell the difference between fear and instinct. I’ve asked God continuously that the Holy Spirit’s nudges within me be loud and undeniable. And I urge anyone who is in this boat, to do the same. Listen to those God-given instincts. Just because something works for someone else in your situation—or people in your life are suggesting the same thing—doesn’t mean it’s what best for you. You know yourself better than anyone else. Don’t let the advice and opinions of others dictate your healing (or your life).

“But the Helper, the Holy Spirit, whom the Father will send in my name, he will teach you all things and bring to your remembrance all that I have said to you.” John 14:26