Stigma for an Invisible Disease
Let me start out by saying that stigma is horrible. Why should people who suffer from invisible diseases feel guilt or shame for having them? I’ve had migraine for years. It started out as episodic migraine where I would have two to four attacks per month. That doesn’t sound terrible, but when it removes you from being productive at work or worse removes you from work that’s where I noticed the stigma really starting.
I was in denial about my migraine attacks
I knew I was having migraines. My doctor was having me track my attacks because she was pretty sure I was having migraines too. The problem was that I was in denial. I didn’t want to believe that that’s what I had. I was inadvertently fueling the stigma I’ve become to dislike so much! My co-workers saw the change in my work performance. I used to be able to juggle several things at once and never drop the ball. They would kid with me saying I was a machine. Migraine changed all that, and for some reason, I was ashamed and felt afraid to tell anyone what I was going through.
Silence perpetuates stigma
Our silence only helps perpetuate stigma. My boss had always been very stern and he demanded high performance, but he noticed a change in me. It took me a few weeks before I sat down with him to discuss my illness. I don’t think it would have taken me that long if I had visible signs of migraine that were acceptable. I had hand and shoulder surgeries that affected my performance, but there were clearly visible attributes that somehow made them ok to disclose openly.
I met with my boss and much to my surprise I was met with empathy and as much understanding as he could give me. I was still learning about migraine at the time, but I gave him all the details and information I had. It strengthened our relationship. I was also surprised that he did research and helped get me set up to utilize intermittent FMLA leave to help excuse my absences. It wasn’t that easy to tear down stigmas with my fellow supervisors. Many of them after hearing about my disease still thought I was just trying to take some extra time off or I was looking for a way to shirk my responsibilities. It was frustrating to say the least.
Education and support are key
Over time I became more educated about the disease that was slowly and insidiously taking over my life. I started reading BLOGs and watching videos that dealt with migraine. This started to give me the encouragement I needed to speak up and speak out about my migraine. I started telling everyone at work so they would know why I struggled some days and was missing work. I told family and friends what was happening and why I was missing out on family gatherings and such. There is still stigma surrounding migraine in my life and I’m sure you see it in yours as well. My advice is to come to terms with your migraine. Be kind to yourself. Let others into your world. You may find yourself pleasantly surprised at what you experience. It’s all part of erasing the stigma of migraine and developing a strong support system you can rely upon.
Have you taken our Migraine In America Survey yet?