From my experience, I’ve known families to be supportive, not supportive enough, or way TOO supportive. It’s something that a lot of us living with MS have to deal with… and how do we address this issue?
I find it… difficult at times, to handle my family, well some of them. The other part of my family… is quietly supportive (which I enjoy… once I found out that they were still supportive in a “back burner” kind of way).
So how are we supposed to let our families know what amount of support we need from them. If they are too supportive, it’s hard to tell them to “chill out” without upsetting them, because they are doing it out of love and general concern for us.
Since I have a rather large family, I’ve dealt with a lot of different “types” of family support. When I was first diagnosed, I was scared and depressed and in the middle of a really bad flare up, I didn’t want to talk to anyone yet my phone was ringing off the hook. I wasn’t trying to be rude by not answering; I just didn’t have anything to say.
I’ve found that the word “I’m sorry” is said to me a lot, since I’ve been diagnosed and I tend to get irritated at times, by hearing it constantly. I understand that NO ONE wants to see a loved one get diagnosed with MS, but life happens… we can’t do anything to control it.
I’ve finally found my ‘balance’ when dealing with my family and their support. Some people in my family show they care and give me the support I need, in just the right amounts. It’s enough to let me know that they love me and care about me, but since it’s been two years since I was diagnosed… the check-ins aren’t as frequent… which it’s kind of a relief. I had told my mom that I love the fact that my family cares so much, but at times, it was too much… I think the “word” got around and that helped my support system become what it is today.
In other parts of my family, it seems as if they don’t really acknowledge my MS, unless it’s obvious (physical signs of my MS). I know I’m not as close to them as others in my family, but it’s always nice to know that they care. I don’t want to ALWAYS talk about my MS to them, but I did drop a hint, that it’s nice to hear from them every now and then.
Then there are some that just flat out ignore my MS… which is irritating in a lot of ways, because I can’t ignore my MS…. not even if I tried to. MS is a life changing diagnosis.
I’ve found helpful tools online and at MS Conferences, to help “show” my family what MS is like, in some ways. It’s so hard to tell them how we’re feeling… and we can never explain it to them or show it to them, where they will completely grasp the feeling, but we can get close…
All in all, I’ve let my WHOLE family know, that I love the support they give to me… even if it isn’t constantly checking in on me… I finally found the ‘dose’ of support that I need when dealing with my MS, and it’s finally working itself out with everyone.
Here is a helpful tip to remember; if someone asks you what MS is, give them information in spurts. This way they can really take in what you’re saying, when you are explaining it. I’ve learned that if I overload their brain with information, they forget some of the important details…
A saying comes to mind, that I’ve used with my family and close friends, “I don’t want your pity… but I NEED your support.”