Is Social Isolation an undocumented symptom of MS?

Are we intentionally pushing people away because of MS?

Over the years, especially when my condition with Multiple Sclerosis took a nose dive, I started pulling away from almost everyone.  Trying to learn to live with the new disabilities that were taking place was hard enough to get accustom to without the added stress of trying to explain and somewhat feeling like I was being judged or pitied by others. Because of this craziness, I lost a lot of friends, especially one that meant the world to me. Pushing her away was not my intention but because I refused to be completely honest about all the symptoms that I was living with, this was replaced with excuses – not even good ones when she wanted us to get together.

I completely withdrew from church and other social activities because of the hardship of dragging around a wheelchair, and needing someone to drive me to and from these events. What I didn’t realize though is with time, everyone else moves on. Invitations to outings and other events stop coming, phone calls subsided, and I found myself extremely lonely and basically stuck in my house except for trips that my husband would take me on, and these were around town with most of them lasting an hour or less due to the fatigue. The exception to the rule on the time frame was doctor appointments which I was at the mercy of the doctor’s timing. It was funny how that was the highlight of that week.

When I found myself improving from a new medication and able to do more, I had no one in which to do it with. My dearest friend had passed away from a short illness without me being able to explain the total and complete truth as to why I had pulled away; which still upsets me to this day that I wasn’t honest with her. Other friends moved on like I said so this left me with some acquaintances but not really anyone I could call up and suggest to go and do anything. This left me in the position to go out and start making new friends. Making new friends is difficult for me not because I didn’t want to, but I lost my ability to be able to really carry on a conversation, to be social. You never think this can happen, but it really did to me. I had spent so much time alone with my husband being at work that learning to be social again was hard and still is to some point.

I spend a lot of time concentrating on not complaining or focusing the conversation on MS. When your life revolves around this stupid disease that leaves very little else to talk about except “HOW’S THE WEATHER”? You can only talk about the heat for just so long! I realize that some of you know exactly what I am talking about because of the posts on social media on this very issue. The worst part I have found about isolation is from family members who don’t seem to understand. I have been accused of using my disease to decide what I do and don’t want to do; to feeling fine when it’s something that I want but feeling bad when there is a gathering that I don’t want to attend. Believe me when I say that this doesn’t just hurt my feelings but it also frustrates me that after all the years of suffering with MS that even some family doesn’t understand the unpredictability of this disease. You can be great one minute then even within the hour feel horrible. So much plays into how we feel and are able to do each day like the weather, (heat/humidity, cold, storms), stress from level of activity during the day, how much sleep we got the night before, etc. Then of course there is the level of the disease in which we have. Even though MS is a broad heading diagnosis, some have Relapsing to Progressive forms. No one should ever try to compare us with others who have Multiple Sclerosis because we all have different symptoms to different responses to medications; therefore we will all function differently from day to day.

What to do about the problem of Social Isolation is going to be difficult to answer due to your reason/s for doing this. First off, if you find that you are living with depression, I urge you to speak with your physician about medication to help treat this. Next, be honest with friends and family about where you are with this disease and what symptoms you are experiencing. Helping them to understand will aid in eliminating judgments that you want nothing to do with them. If your friends/family are feeling ignored, try to plan a small gathering in a place comfortable for you and limit the amount of time for this function. Try leaving the topic “MS” in the closet unless their questions are of true concern and needing answers. Phone calls to these people don’t take a lot of energy, so don’t sit back waiting for them to contact you. It lets them know you care and thinking about them. On good days, try and plan an outing in which can be accomplished without causing added stress or symptoms for yourself. If you are invited to a function where the heat/cold will affect you but the pressure is on to attend, plan ahead for it. Get plenty of rest the night before, dress appropriately for the weather; limit your time out in the elements. This may mean making arrangements to go inside for a period of time, or even sitting in your car to cool down or get warm. Keep yourself hydrated preferably without caffeine. In short, do all you know to do to be able to function for a period of time; then leave when you feel it is time.

To be honest with you, not everyone will always understand your decisions to stay home. All the explanations in the world won’t work but if you need your own time and space then listen to your body. Make sure you are honest with yourself and others about the reasons and not use MS as an excuse if it isn’t. Hopefully by doing this you won’t be accused of using your disease to stay at home.

MS Blogger and Multiple Sclerosis Activist shares her journey living with MS, tips for others living MS and her husband, Steve, offers his insight as a caregiver for MS.