“Seizures? What the heck do you mean… seizures? That’s way worse than MS!!”
That was my reaction when I was told I had had a seizure, and that a small percentage of people with Multiple Sclerosis develop seizures over the course of their disease. Lucky me!! (NOT.) I have since been confirmed as having a seizure disorder, likely due to the placement of an a-typical lesion over my left temporal lobe.
Funnily enough, I figured “OK – MS I can handle. But this seizure stuff? That’s way too scary for me!” Seizures meant a loss of freedom, stigma, fear. MS meant change, for sure – but not as “in your face” dramatic! MS also did not come with an automatic “no driving” policy, like having seizure often does. In my case, since I have no warning and suffer from clonic-tonic seizures (Grand Mals), I gave in my driver’s licence knowing that there is a high chance I will never get it back. I had accepted the fact that I had MS, and the course it was likely going to take over my lifetime. However, in none of my visualizing had I ever imagined myself without the ability to drive. That was a shocker, to say the least!
The hardest thing I find to deal with, when comparing seizures to MS, is the stigma. People with chronic illness face stigma of some sort all over the globe, especially those of us with “invisible” diseases. People with MS can face the stigma of people seeing them as “always sick”; disabled so not “able”; and so forth. People with seizures – they can face the same things, but the one thing that struck me the hardest was the fear. People can be afraid of those of us with seizures – afraid because they don’t want to be around if one happens. It can be scary to witness.
Personally, I have found that dealing with the reactions of people to knowing I have seizures can be bigger than the seizures themselves! That’s why a strong support system is critical when dealing with a seizure disorder. I have also started a goal of raising awareness of the stigma against seizures by getting back into synchronized swimming and facing the stigma and fear head on. I plan to be competing again by my 50th birthday…which is not too far off! You can follow my wonky journey at Carolyne’s Facebook Page – Seizure Disorders: Swimming Against Stigma.
There are local Epilepsy & Seizure Disorder groups that can help you if you are dealing with seizures. (Simply google “seizures” to find help near you.)
Seizure & Epilepsy Links
- Epilepsy – PubMed health
- Epilepsy Canada
- Canadian Epilepsy Alliance
- MS: Can it cause Seizures?
- National MS Society: Seizures
Carolyne’s Coping & Awareness Blogs:
- Lifestyle Changes & how to cope
- Dealing with Stigma
- Seizure Stigma: A funny Thing Happened on the Way Home…
- Scary Seizures
- Seizure Fallout
- Carolyne’s Facebook Page – Seizure Disorders: Swimming Against Stigma
- It takes a Team to manage your Health
- Smorgasbord of Seizures (maggiemendus.wordpress.com)
- Struggling With Epilepsy Symptoms (foodstaycation.com)
- Epilepsy 101 (webmd.com)
- Epileptic Seizures May Worsen During Menstrual Cycle (nlm.nih.gov)
- Epilepsy: With medication, many people can live ‘full and productive’ lives (reporternews.com)
- Help in the Fight for a Cure (amcpress.wordpress.com)