Life with MS

Over the course of the last year, researchers, public health officials, and the news media have
expressed concerns about the effects of social isolation caused by the pandemic. But for many people with
MS, social isolation is a long-standing problem. They may have left the workforce, cut back on social
engagements, and even – sadly – lost friends who do not know how to handle being a friend to someone with
a chronic illness.

Sometimes, though, individuals with MS feel socially isolated even when surrounded by family and
friends. They may not lack company, but they may lack people who understand and relate to them. Their
loved ones may not see or may fail to grasp what the person with MS is going through. They may feel left out
when loved ones don’t consider their needs or limitations when making plans or participating in activities.
Is this your situation? If so, use these tips to help improve your situation.

1. Be vulnerable again.

When we have a history of people misunderstanding or overlooking our needs, the human tendency is
to wall yourself off and stop asking for help. This leads to feelings of isolation. But the truth is, sometimes it’s
not that people don’t care, it’s just that they are slow to accept change and we give up too soon on helping
them understand because we feel hurt. Be willing to be vulnerable with your family and friends, even if their
lack of understanding has hurt you before, and you may find they want to be there for you. Of course, this
doesn’t apply to people who are intentionally callous or cruel. But if you know your family or friends to be
good, caring people, give them another chance. Or be willing to be vulnerable with someone new.

2. Be mindful in your choice of words.

Have you ever had a situation where you were unable to do something because of the bone-crushing
tiredness that comes from MS fatigue, only to have a loved one complain, “I’m tired too!”? Sometimes, to help
loved ones understand that what we are going through is medical, it helps to use medical language. Instead of
saying, “I’m exhausted,” which anyone may say at the end of a long day, get in the habit of saying, “I’m
experiencing severe MS fatigue right now.” If pain is hindering you, instead of saying, “I’m in pain” which is
vague and leaves the degree of pain up to interpretation, be specific. “I’m having intense muscle spasms and
my pain is at a seven out of 10 right now.”

3. Be creatively social.

Perhaps you can’t engage in the kind of social activities with your friends and family that you used to
do. That doesn’t mean you can’t engage in any activities. Maybe you can’t go hiking with your friends, but
could you explore nature together in a park with a short accessible trail, and have an outdoor picnic? Perhaps
you can’t mingle at a party and end up sitting in the corner feeling alone. Well, maybe you have to sit, but
does it have to be away from the action? Can you park your chair near the bar or the food instead so that
people come to you?

4. Be outspoken about your needs.

Family or friends may fail to take your needs into account when planning social activities. But that
doesn’t necessarily mean they are unwilling to adapt to your needs – it just means they didn’t think of them in
advance. Maybe your cousin planned a family get-together for outdoors in the heat of day. There is nothing to
lose in saying “The heat causes my MS symptoms to flare up. Is there any chance you’d be willing to push this
back to afternoon when it starts to cool down a bit?” Maybe they’re willing to adapt that way, or perhaps
they’ll counter-offer with moving the event into the shade. Even if they won’t adapt and you end up not going,
maybe they’ll remember to consider that the next time they plan an event.

5. Be open to new networks.

As much as your family and friends want to be supportive, it can take years – and a lot of explanation –
for them to really understand what you go through with MS. On the other hand, there are about 1 million
other people with MS in this country who already have a pretty good idea what it’s like for you. If you aren’t a
member of a support group, either online or in person, find one. And if the one you find isn’t for you, find
another. There are people out there who get you. You just need to find them.