By Sanaz Tahernia
Multiple sclerosis (“M.S.”) is a condition where the body’s immune system attacks its own central nervous system. Studies show that 2.3 million people worldwide have been diagnosed with M.S., and that certain parts of the world have a higher prevalence than others. Sweden has the highest prevalence of MS in the world.
While I was visiting family there, I spoke with a young lady who was recently diagnosed with MS. She shared her story with me, and I felt honored to have been allowed into such a personal part of her life.
Sanaz Tahernia: “You recently had a tragic medical diagnosis. What happened?
Sarah Johanson: “I lost vision in my right eye. I couldn’t see colors well and it gradually worsened. I was later diagnosed with M.S.”
Tahernia: “What did you think when you couldn’t see properly?”
Johanson: “I thought it was low blood sugar. It was really weird. I called my mom, and she suggested I call the health information line here in Sweden. When I called, I spoke to a nurse at an eye doctor’s office, and she immediately scheduled an appointment. She said it may be inflammation of an optical nerve. I had plans to travel to see my family the next day, so I figured I’d get some eye drops and that would be it. I wasn’t worried about it at all.”
Tahernia: “So how did you find out it was M.S.?”
Johanson: “I wasn’t diagnosed there. The nurse did confirm that it was inflammation of an optical nerve, but she suggested I see a neurologist. When I went to the hospital the E.R. doctor told me I needed to be admitted. I was admitted on a Thursday, and then released the following Sunday, after my last cortisol drip. It was my 25th birthday. At that point, I thought ‘this could be M.S.’ It was then that I realized that I was in a really bad situation.”
Tahernia: “What made you think that it could be M.S.?”
Johanson: “My aunt has M.S. as well. When the doctor broke the news, I was really nervous because I had almost already had figured it out. But when he told me it was M.S., I don’t remember anything other than just crying. All I could hear were the letters M.S. over and over again in my head. I’ve always had weird symptoms that doctors could never explain. It was during that visit that I realized that every unexplainable symptom that I’ve had was, in fact, M.S. And after that first episode, I went through a few more within a few months.”
Tahernia: “What would you experience during your episodes?”
Johanson: “I’d get dizzy and lose my balance. My hips would go numb and I wouldn’t be able to walk. During my second episode, I couldn’t walk for three days. I had to be carried around. And then after that, I needed a walker. It all lasted about a week. But I still have pain in my legs, and they tingle if I go for very long walks.”
Tahernia: “So what do you experience when you go to the E.R.?”
Johanson: “You almost feel like you’re forgotten. M.S. is a problem that requires people to help you, but it’s not life or death. So they have to take those really important cases before you. You feel out of place. My biggest fear is having to change medication because you have change to a stronger one. And right now, I’m on the strongest medication. So if the doctor changes it, my next option is to have this really big procedure. It’s almost like going through chemo. I become sterile, and I have to be isolated for a few months to break down my immune system. It’s really harsh.”
Tahernia: “Given that you’ve been living with your diagnosis for a period of time, how do you feel when you experience each episode?”
Johanson: “I get really mad. It upsets me because when it happens, it almost always happens in the bigger muscle groups, and I can’t do as much. I have to be dependent on people being close by to help me eat and sometimes go to the bathroom. That’s the worst part. I get mad at my body because I’m still in that mindset that I don’t have the disease most of the time. I feel like I’m not sick, but when it happens, it contradicts me.”
Tahernia: “So you’re a part of an M.S. support group. How has that helped?”
Johanson: “It has helped a lot. We’re about 20 people, and we meet weekly. Having M.S. can get very lonely. When you take sick leave for as long as I have nobody understands. When I’m tired, people will say, ‘yeah, but I’m tired too, but I can do this.’ But when I talk to my support group, they know exactly what I’m going through. I don’t have to explain anything. It’s really nice.”
Tahernia: “So for my final question, as negative of a situation that your diagnosis has created for you, is there any positivity that you can derive from the circumstances?”
Johanson: “There are a lot of things actually. When I recently got my sight back, I was like ‘wow, this place is beautiful!’ It’s so cliché but when you take something for granted, like your ability to walk, stand up or even go to the bathroom, and its taken away from you, but then you get it back, it’s such a good feeling. You become proud of yourself in one way, but you’re still sad in one way. You go back and forth. I just started looking at my life and appreciating things differently. I’ve started to treat myself to a lot of things, and I stopped doing things that I didn’t like doing. So now I do more stuff that I enjoy. I do things because I feel good about doing it.”