Well, I'm going to try this again. I've been officially diagnosed since 2011 but I feel I've had symptoms a lot longer. Probably since the late 90s. Anyways, My problem is in my family still not understanding the toll MS can bring on someone. Not just physically but also the mental toll. One example is my son. (24 years of age) married (soon the be separated) You see he is a gamer, I've tried to talk with him but he just blows me off. On top of that, I don't think he understands my frustrations which I deal with every day. The stress he and his wife put on me every day with the fighting. He also says things like: "Shut up dad and go get a job." He just doesn't understand how every day is just a victory to get through. Then I have my youngest ( He is autistic) He gets so angry because I'm sick. He tries to understand but he can't. He is more helpful though. I'm not sure what is harder the mental or physical aspects of this MS. I do know the stress they put on me is not helping. Do any of you deal with these issues? Hopefully, things will get better. I am also currently: without meds or a neurologist, or any kind of employment, I don't qualify for disability because I've been out of work for more than four years. All of this adds to the whole problem. Anyways just venting a little.
I am sorry that your family doesn't understand what you are going through and haven't given you the support that you need. You may want to view our information about Family Matters.
If you are looking for resources to connect with other people who understand what you are going through, you may want to see if there is a local support group in your area. Click this link to search.
You may also want to consider seeing a counselor, either with your family members or alone. This website
allows you to search for counselors in your area.
You can search for an MS Care Provider by using this link.
I also welcome you to contact us at 1.800.344.4867 (M-F 7am - 5pm MST) to search for other neurologists and to discuss your situation more and explore ways that we may be able to assist.
MS Navigator Stephanie
Thanks for venting a little...reminds me that i am not alone!
Feel your pains & frustrations concerning your family. My situation is the same but different where my family is concerned. Have had to "walk over the dead bodies" and take relationship breaks from the majority of my family that just doesn't get it...absolutely heartbreaking!
The powerlessness & stress of it all makes my physical symptoms worse as i understand it to be happening. I find it somewhat easier to accept when i keep these negative forces at arms length as i navigate life during my daily routines. Simple....but FAR from easy!
Thanks for your post. Helps remind me that i am not alone in this insanity, provides some relief knowing this but far from the kinda relief one feels when forceful solutions play out and noticably reduce the overwhelming stress levels....grrrr
Sorry I'm late to join in the conversation. I just need to say that I've "lost" my family in this process or path called MS. They don't want to hear the truth, or too much about it, they don't want to learn anything. They seem to be in stubborn denial; and they say outrageous things, so that I do not consider the safe or supportive.
This was a great source of pain for me, and a very isolating feeling came with it. In the recent months, more and more I get that they can't get it, and it may be too much to have my
expectations of them. Also, I've had to build a new family or support system. Not easy to do when you're struggling already! It's an ongoing process, still hurts a bit, and has taken a few years.
I totally relate to you "venting" on family!