Whether you were just diagnosed with Multiple Sclerosis or have had MS for years something that doesn’t always change is how the people around you react to your need of support. Some people are very lucky and have family and friends who are actively there to provide support, to take interest in learning about MS, and to do their best to try to really understand what you are going through; to understand the pain you feel that is so difficult to describe. I envy those people. Don’t get me wrong, I have support here at home, but I have never felt like I had the support I wanted. Maybe I have unrealistic expectations? After all, how can we expect the people around us to know exactly what we need when we are down if we never communicate those specific needs?
It’s no secret to those closest to me that communication was never one of my strongest attributes and even though I feel I have greatly strengthened that “skill” over the last few years, I believe my inability to properly communicate has burnt down many bridges keeping me in a world lacking the support I want and need from people. That will change but it takes time; time to reinvent who I am, how people look at me, and what people feel I need. Even though I have come to this realization and am trying to change and better myself, the world spins on; “life” keeps happening. So this problem I am describing? It is still a problem even though I am trying to fix it; I mean, just yesterday I realized I was expecting something from someone whom I never told what I needed… That was not fair of me.
So, I know it’s not healthy but I found it much more simple (at the time) to learn how to deal with my problems and emotions on my own. The problem with this is that I was simply suppressing my emotions; bottling them up inside. But still, even now, when I do try to open up and I don’t receive the reciprocation I was hoping for? It’s very disheartening; I experience a rush of pain and rejection that leads to anger and depression and so many other negative emotions. I have realized though that this is not at all fair to the people around me; to look at them like it’s their fault or that they don’t really care. It would be like me working on a puzzle and realizing I need help finding a specific piece. I go to someone and ask for that piece but don’t describe the piece; the details of what kind of piece I need. How are they to know what kind of piece to bring me? There are just so many possibilities and what are the odds that they can guess what kind of piece I need if I don’t actually communicate it to them? And then to be angry when I don’t receive the piece I need? Not cool…
OK, that was my unhealthy way of dealing with MS and the many hardships associated with it so what was my healthier way? Well, tell me this; where are you right now? You’re on a computer, online, where there are thousands of other people going through the same thing you are. When I found these people and reached out to them I found that I could receive exactly what I needed! They have been through (or are still going through) exactly what I am and so, that puzzle piece I need? I don’t even have to describe it because they know exactly which piece I am referring to. I joined support groups online; forums, Facebook groups, and various blog communities including my own (for example). I survived off this for years because it really helped! Blogging has also helped me a great deal because it allows people to find me who are looking for others going through the same thing.
Even still, I have to admit, the support you can get from someone face to face that you care about and that cares about you is a much different type of support than you can receive online but those online friends? They can understand things that people without MS never can. Ideally, it would be great to have a little of both but when you are not receiving the support you need at home that could partially be something you yourself have to work on. At the same time I have heard of many instances where people are trying to communicate with people at home but those people just will not open the door of communication. It’s a very unfortunate situation. That is where you really need to find a community online who you can grow close to and who make you feel good. Some of my closest friends are thousands of miles away; I may never meet them in person but they are still important to me; more important than many people I personally know. When you open up to someone who wants to open up to you, the circumstances don’t matter; you can create a very powerful bond. A relationship is just a synonym for a connection; we can have many connections with people in life but what matters is how strong those connections are and guess what? You don’t have to be able to stick your hand out and feel theirs to have a strong connection.
Aside from online support groups there are many “in-person” support groups. For example, there is an MS support group that meets at my medical clinic once a month for people with MS to sit and talk or just hang out and be friends. I have never gone but speaking to a few people who have it sounds like a really great thing. Not everyone is OK with that online friendship; they need a physical person they can see and talk to which is more than OK. I also receive newsletters, from a couple different medication (DMTs) companies I have been on, that alert me of when there is going to be a speaking event about MS. A neurologist (or some other medical professional) usually has a speech about MS, answers questions, food is generally served, and you are surrounded by a room of people with MS and their caregivers; their support system. I go to these when I can and have created personal friendships thanks to these events.
The support is out there, you just have to look for it
and it’s typically not that difficult to find.