Being diagnosed with and living with a
chronic incurable condition can test and change every relationship a person
holds dear. Invisible symptoms are especially tricky. I know after my Multiple
Sclerosis diagnosis I didn’t want to burden others with my problems. Just
because I had a life altering condition, I didn’t think it should affect
everyone else.
One of the adult life lessons I’ve learned is
that people who care about us WANT to help. Withholding our struggles increases
stress on our part and creates a feeling of being pushed away on theirs. They
hate feeling helpless. We do too, but we have more information at any point
than they do. Think about when you’re driving
a car in inclement weather compared to when someone else is driving and you’re
in the passenger seat. When you’re
driving, you know whether you have control of the vehicle or not. You know how
well the brakes work, how alert you are, and how long it will take you to stop
if something happens. A passenger has little information other than what they
see and feel, and they have to rely on their trust in you. Having MS is like being the driver, and our friends are the passengers when it involves our health.
While their intentions to try to fix our
problems, make us feel better, or help in any way they can may sometimes feel
pushy and cause conflict, working through the unknown and developing a new
relationship dynamic is well worth the effort. All of the relationships I still
have today are intensely richer for the awkward conversations we’ve stuck with and
the commitment we’ve made to interacting differently than we did before I was
diagnosed.
Invisible symptoms like fatigue, pain,
numbness, balance problems, bladder and bowel problems, cognitive issues and
heat sensitivity can affect how we feel even when we think we’ve got it all under
control. There are times when I think I’m doing fine or faking it well, and
dear friends will say they notice I’m not feeling well. It’s especially
impressive how well people know us when symptoms are subtle and we may not even
realize we don’t feel as well as usual. For me I notice that my patience
lessens and I have a tendency to feel more pressure from people by what they
say.
I asked two dear friends what they had to
say on this topic, and one said that what hurts her feelings is when I hold
back and distance myself. I can justify it by saying I don’t want to worry her
or bother her, but it’s more likely that I don’t feel like admitting I’m having
an issue or that I’m not up for hearing advice in that moment. One skill I’ve
tried to beef up is to recognize when I’m feeling pressure or don’t want to
talk about something anymore and say so. I’ve noticed it’s harder to do this the
longer I wait to say something, And while saying I’m not up for discussing
something in that moment may hurt their feelings, I think it’s better than
continuing to suffer silently. The other skill I’m working on is to tell them
that while I’m not up for it in that moment that I do appreciate their concern
and perspective. I also want to start saying that I think I can continue the
conversation another time.
Being self-aware, communicating consciously and
not reactively, and considering other people’s perspectives has made living and
loving well with MS possible for me. It’s definitely improved my relationships,
reduced my stress level and contributed to a life I love.
