This post is aimed at anyone who has life and family has been affected by Multiple Sclerosis (MS). Like Cancer, MS is one of those diseases that affects the entire family and social circle of anyone afflicted with it – if, that is – the family and social circle choose to stick around.
However, unlike having cancer, there is no chance of a cure at this time. That is not to say that I am in any way comparing MS to cancer.
Unfortunately, I’ve found through my own experience and through speaking with dozens of other MSers (as we call ourselves), that spouses, life partners, family and friends, turn away and drift out of the life of those who find themselves afflicted with this disease as soon it progresses to the point when they can no longer carry on as though they are not sick. As in when they can’t fake it anymore. The same is sadly true for people suffering with any number of other chronic illnesses, diseases, and disorders with mostly invisible symptoms.
Happily, while I have “lost” family and so-called friends over the years – both before and after finally being diagnosed in late 2012 – I have also been more fortunate than many in that my husband did not run away. Not even after it became apparent that despite how “good” I look, I truly could no longer do much of anything. And many other true friends have rallied behind me, accepting me as I am with no judgements or offensive “interrogations” about my mostly invisible symptoms.
Sadly though, my experience seems to be the exception, not the norm. At least not from the many, many other MSers I encountered or read about online.
There are a number of places online where you can go to seek information, assistance and support if you or a loved one has Multiple Sclerorsis. I personally recommend that anyone affected by this incurable, progressive and often debilitating, neurological disease – be it the person with MS, or the spouse, child, sibling, parent, friend or any other person who loves someone afflicted with it – researches this monster of a disease extensively.
In terms of getting a diagnosis, do not take the word of any one doctor, seek second or third opinions whenever possible. And get those opinions from neurologists who specialize in the diagnosis and treatment of MS. Do not rely on a family physician or general neurologists. I am not in any way attempting to slam such highly trained and skilled individuals, but MS is best identified, understood and treated by those who specialize in it. Remember there are a number of other diseases and conditions that can closely mimic MS, so it’s important to have the right tests and see the right doctors.
Another thing I cannot emphasize enough is that if you have MS, or the spouse/caregiver of someone with MS, is that you NEED to find support with others who truly understand exactly what you are going through. If you can access support groups in your community through your local MS Society, local hospital or wherever, that’s great, go for it! However, even if such groups are available, they generally meet at most, once a week, and there will be times you will have questions and/or need support, when no meeting is handy.
That’s where the wonderful world of the internet comes in. I am a member of a number of online MS Communities and highly recommend all of them. I have listed just a few of them below (as clickable links) and am a member of all of them. If you wish to contact me at any of these communities, please feel free to and note that I use the same Username on all of them as I do on this blog – Wordsgood.
An international MS site where you can find information, conversation and support. This site is great for not just people with MS, but also the partners, family and friends of anyone with MS. (I’m a member.)
This site that includes general information and resources, as well as a discussion board and some personal MS Specific Blogs hosted right one the site. The one I follow closely is by Ashley Ringstaff.
This is the main Canadian website for MS, it contains information, resource links and a good, but sadly does not have a very active chat forum.
A social media place for people with MS to meet, chat and share info with each other. While you can find great information and links to other resources at this site, it truly is a social media site targeted specifically to be an online peer support. This the perfect place to go when you need to say whatever is on your mind, good, bad or ugly, and get the support you need, without having to worry about politely being told to suck it up (basically). And in return, you can offer that same kind of support to others on their off days.
These are just a few of the many online sites where you can find MS information, other resources and support.