Doubt and Suspicion Are Painful
So many times in the community, our members express anger and dismay when loved ones or friends do not understand how this disease affects their bodies. Feeling accused of what is not true, like being lazy when fatigue or pain interfere with plans, members are justifiably upset. It’s enough to feel like your body is betraying you without feeling like your friends are as well.
Until recently, I relied on a sense of sympathy having not experienced this betrayal myself. To be truly empathetic, I believe that I would need to have experienced the same time. But I definitely try to be understanding and encouraging when responding to comments from our community members.
When others don't understand MS
But recently, I had an interaction with a family member that felt very similar to the stories I had read over and over again surrounding disbelief and unreliability.
I was pointedly accused of being untrustworthy. Totally shocked at this accusation, I hardly knew what to say. To suggest that someone is untrustworthy is to imply they may be unreliable, deceitful, devious, conniving, and nontransparent. Each of these words and thoughts are hurtful.
Trying to pinpoint the issue
It is my belief that the feeling of distrustfulness coming from the other person arose not from something (they believe) I did wrong, but from their perception of actions I took to help both of us during a very stressful time, during which we were both grieving in our own ways.
The details of the circumstances don’t matter for this discussion, but the feelings that this accusation stirred in me absolutely do matter.
I get it now.
The importance of true support
Since being diagnosed with multiple sclerosis and rheumatoid arthritis, I have been blessed to be surrounded by people who love me, who seek to understand what these diseases can do to my body, and who trust that what I share is absolutely the truth for me at that moment.
I have never been doubted about feeling fatigued. It has never been a problem if I need to cancel attending an event or choose to stay home to avoid contact with others who may be ill.
We're our harshest critics
I am always harder on myself when I feel “less than” and conjure enough of my own feelings of extreme disappointment and regret. These internal feelings overshadow any negative vibes that friends might have unintentionally sent out into the world regarding me and my unpredictable needs.
The interaction with my family member has shaken my world a bit. It has made me examine what others might see or feel when they interact with me. This is tough for me to imagine a situation where I obviously elicited suspicion in someone else. I am such an open book.
How can we be more open and authentic?
Just last week I was invited to speak to a group of MS activists about how to be authentic and persuasive when sharing their stories. I am always very open and honest about so very many details of my life that it is easy to be authentic. I aim to live a genuine life.
Other than being extremely hurt by my family member’s misunderstanding and distrust, how can I use this experience to help others?
Focus on your real needs
One thing I plan to do more of is to encourage people and remind them that they know deep down that they have done nothing wrong. What others think of them doesn’t change who they are. Lack of understanding feels horrible when you are struggling to balance your personal needs (e.g., to rest rather than meet for lunch with friends) with your desire to maintain a forced active life that may be harmful to your body and well-being.
Let people in, but also let people out
You may find that friends drift away if they feel you have been unreliable. You may find that there are friends and family members who will be there for you in a way that is wonderfully supportive and that you never anticipated.
The hard part is being open and honest about your needs. Honesty and transparency open up the path for understanding and acceptance. Be aware, however, that even if you are honest with yourself and others, there may still be people who don’t believe you. And that’s still okay.
Do you have stories of people not understanding you or your actions? Please share your stories in the comments below. I know that I’m not alone in this and neither are you.
Were you misdiagnosed with something else before receiving a MS diagnosis?