How to Post Effectively on a Multiple Sclerosis Forum
So you’ve been diagnosed with MS—perhaps recently or a year or two or three or five ago—and you’re ready to reach outside yourself to engage with other MS patients. It’s a good move for you and for all of us. You need to feel not so alone and confused and we need to know you’re out there so we can help you feel like you’re part of a family.
So often people with multiple sclerosis write their first-ever posts about their biological families’ insensitivity to and denial of their disease. They feel isolated and punished by this disbelief, as though they’ve done something wrong and been sent to bed without supper. Biological families assign roles to its members and chronic disease doesn’t fit easily into the script. Familiarity can be the very thing that distances the person with multiple sclerosis from her kin. An online community of people with multiple sclerosis follows no such script with its many members. We can virtually unconditionally express our support and sympathy. Perhaps ironically, the lack of familiarity frees us all to give each other the words we need to hear to feel better. Such a simple gesture has a big impact because the familiarity lies in how multiple sclerosis affects us. We don’t have to know each other to know how that feels.
Becoming part of a new family also carries a few rules and responsibilities. Think of it as getting engaged and easing yourself into a new set of interactions with your prospective in-laws. Or think of it as making a new friend. You put your best foot forward, act easy-going and receptive, try your best not to be argumentative or defensive. It’s like entering any new social group. The first thing we do is quietly observe and learn the rules of this new circle before jumping in and revealing ourselves.
Another quite common first-ever post is one that lists the person’s symptoms and concludes with an appeal to the community: “Does this sound like MS?” or “Do I have MS?” One of the community rules on any health forum prohibits its experts and members-at-large from offering any medical advice.
But what if you are in the process of being diagnosed? Or teetering on the edge of decision to see a doctor for ongoing neurological symptoms? You have a million questions and worries. How would you bring this problem to a multiple sclerosis forum? Should you bring it at all?
Here is an example of the kind of post that makes for a difficult response:
“Hi, I’ve been having pain in my feet, dizziness, trouble urinating, and it’s been hard to concentrate. Any feedback would be appreciated.”
There are several reasons why the multiple sclerosis community would have trouble responding to such a post. Most have to do with what the poster didn’t tell us. We don’t know whether she’s been diagnosed with MS—so we can’t tell if she is asking whether she’s in a flare, having these symptoms for the first time, or has ever seen a doctor at all. Did she Google her symptoms and see multiple sclerosis pop up and decide to query us based on that?
Providing as much context for your post as you can helps the community help you. Something as simple as revealing any doctoring you’ve done for your symptoms is very important. If you don’t tell us you’ve already seen a doctor—or two or five—we’re going to tell you to see a doctor right off the bat and not say much else. The same goes for medications. If you don’t tell us whether you are taking any, we might ask you about it because we know that those meds could be playing a role in how you’re feeling. The more information you provide about the things you’ve done to investigate and/or treat your symptoms, the better we can advise you.
This is particularly important with regard to multiple sclerosis. The single most confounding thing about MS is that most of the symptoms are non-specific, meaning they are too general to be indicative of one particular medical condition. So if you give us a laundry list of symptoms and not much else, you could be describing anything from sinus and a hundred other infections--to musculo-skeletal injury from overdoing it at the gym—to diabetes or thyroid disease or any assortment of autoimmune conditions—to side effects of medications you’re taking, and many more possibilities besides.
If you have a multiple sclerosis diagnosis and you’ve lived with it for a while, it’s important to state that in your post if you want some feedback about your personal case. It’s easy to assume people on a forum know things about you that you don’t need to communicate. We must remind ourselves that we are unknown entities and must state the obvious, as laborious as it might be.
As you can see, there is a way to bring the details of your predicament without asking for medical advice or a diagnosis. It involves honing your communication skills.
- Keep in mind that no one knows you or your history. Tell us the pertinent details. It’s okay if your post is long, but remember to break up your story into easy-to-read paragraphs for those of us that are vision-impaired.
- Try to avoid asking for a diagnosis. Not even a doctor can give you one without seeing you as a patient, giving you a physical exam and reviewing your medical history/records.
- Ranting and venting is totally okay. You’ll find plenty of sympathy and support.
- If you visit a forum wanting to share your MRIs or other test results with the intention of getting a second opinion, note that a forum is not the place for that. If a trained radiologist and neurologist can’t determine a clear-cut result, then your case is a difficult one and will take time to sort out by medical professionals.
So take a deep breath, read the community rules for posting, and tell us all about yourself. We’re on your side and want you to be happy! You might make a lot of new friends on a forum, real keepers who understand you better than anyone in your daily life. I cherish the online friends I’ve met on forums, people I would never have met otherwise—and all because I had a need to reach out for a collective ear. I got so much more in the bargain.
How well do people around you understand MS?