When first diagnosed a little over two years ago, I found the hardest thing to cope with was the physical unknowns. My mind immediately went to the worst case scenarios - People with more progressive forms of MS who had it longer or had many, severe relapses that resulted in permanent physical damage. Wheelchairs. Walkers. Inability to move or get out of bed. I have relapsing-remitting that has ultimately been well-controlled. My fears proved to be exaggerated for my situation. I did not account for the mental and emotional turmoil that would end up breaking me, leaving my mind a playground for doubts on who truly cares for me or who potentially even could in the future.
People's true colors show in difficult times
Let me begin by stating that the issues I am discussing are based on actual experiences. The thoughts and doubts I have are rooted in things that have happened instead of the what-if’s that plagued me originally about physical disability. I have discovered things about people that I never imagined existed within them. I am admittedly naive. I always have been. I have a habit of trusting people until given reason not to, and sadly, even trusting after given reason not to. Yes, I am that person to a fault. It can wreak havoc on a person when they come to terms that they will, in fact, need people to rely on when things get tough. The true colors of people really start to show when times are difficult.
The slow disappearance of friends
While not directly malicious, the first and often most common theme for me has been friends disappearing. They seem to slowly drift away. As is often the case for those of us dealing with fatigue, I often have to back out of things I have agreed to. Despite trying to explain why, I’ve found people lose faith in you and your word. I have tried to amend my initial response by flat out saying, “...if I’m up to it then.” It doesn’t seem to make much of a dent in the resulting disappointment if I ultimately have to cancel. It does hurt though because a lot of these people were so concerned and so supportive at first. But as time has gone on, they have just slowly and quietly disappeared. It should be noted that some have remained and new friends have come along, and for that I am extremely thankful for. However, the doubt is forever there - When will this person get tired of me? When will I no longer be worth inviting anymore? How long before they give up on me?
Will anyone ever understand?
On the other hand, there are some actions that are so hurtful that it is malicious. A direct result of these actions has been a divorce from my husband. I have had my need for help thrown back in my face by way of being told not to ask for help from him when we argued. Before being diagnosed, but while still exhibiting symptoms (which included sexual issues) he began calling chat lines and other women. The fact that he was an over the road trucker who was out for weeks at a time only heightened my suspicions and fear. Despite all this, I did attempt to work things out with him. However, after the divorce was final, he made a comment that will stay with me forever: “I was tired of having to schedule sex with my own wife. I can’t live like that.” Although I am done with him, the doubts linger in regards to new people. Will anyone ever understand? How do I even approach the idea of dating in the future knowing that sex is a big deal but I can’t just be spontaneous? Who would want to put up with me? What if I am just a big burden?
Never expected the emotional pain of MS to be the hardest to manage
I do recognize that all of these issues indicate low self-esteem and some mental health issues. I have had problems in the past, so it is no big surprise. I will say that I do take medication for depression and anxiety, as well as visiting a therapist regularly. I highly recommend it if you are in need of it. I am also making use of CBT, or cognitive behavioral therapy, to help me identify these negative thoughts and put them to rest with logical analysis. But I am still surprised by what has affected my most since my diagnosis as opposed to what I thought would get to me. I was not prepared for how others would react, and act, towards me. I never considered that the most painful thing about MS would be my emotions. I never accounted for the toll the doubt would take on my mind. Things I was certain of before, such as having friends and being loved, have had a dark shadow cast on them. Please take care of yourselves. This disease is terrible in so many ways. It takes work every day to cope with all aspects of the damage it can do to not only body and mind, but heart as well.
Do you have a fear of needles and take medication that requires injection?