Multiple sclerosis (MS) patients spend an inordinate amount of time searching for answers. And even when they get an answer there are only more questions.
Imagine for a moment that you have lost your wallet. Inside of it is your identity and other reminders of who you are. You start by looking everywhere you have been. You then move your concentration to some unlikely places. You look over and under. You lift up couch cushions and look in the freezer. After not finding it, you ask those around you if they have seen your wallet. One by one they say they have not seen it.
Finally, a good friend says they know where your wallet might be. Instead of just telling you where it is, they insist that you play the hot /cold game. So, you wander around looking while hearing that you are cold, colder, warm, warmer, burning . . . then hot! You found it. You found your wallet after a long time of searching and asking for help.
You feel great until you look inside your wallet. Doggone it! There are items missing and they are valuable. This means your search is not over. You need to find your IDs, credit cards, family photos. This is what it is like for many MS patients.
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Years of tests and medical visits leave people living with MS feeling frustrated and tired. We know there is something wrong with our bodies. We might have issues with walking or eyesight. We might have unresolved pains. MS can make itself known in a variety of ways. Due to the damage to the myelin sheath caused by this chronic neuroimmunological disease any area of the body is a possible target for attack.
Four years before my own MS diagnosis, I recall having debilitating pain in my kidney area. It was the worst pain I had ever felt. Polling friends and acquaintances produced a layperson diagnosis of kidney stones.
My healthcare provider thought the same thing and sent me for an MRI. The MRI showed absolutely nothing. After suffering through a mysterious pain and the derision of the MRI staff, I had nothing to show for it. The pain resolved itself. The process of checking into my pain was itself a pain. I had to take time from work for my initial appointment and then for the MRI referral. I had to get undressed and be vulnerable with people I did not know. I had to go to a cold room alone. I had to lie down while a loud, cold machine determined my fate. Close your eyes and imagine doing that again and again for potentially years. You might also be dubious when you visit, yet again, someone who is supposed to help you.
It is difficult to be a positive HCP when having to deal with someone who is regularly unpleasant. In some cases, it is a personality trait, but some people are expressing their frustration. Tired from continual testing, medications, and doctor’s visits. Tired of being poked and prodded and questioned in pursuit of relief from symptoms or checking for progression.
Unfortunately, giving healthcare providers the proverbial side-eye is a common result of exhaustion. Rather than a substantial conversation, they can get an unexpected response. Outward expressions like anger or depression are simpler to detect.
Fatigue and frustration are common emotions that color encounters with MS patients. It’s like that missing wallet and contents. Just when you think you are “hot” you are actually “cold,” and you must start looking again. Every new symptom or exam is like being “cold” when you have MS.
Compassion and understanding are a good starting place in dealing with a frustrated patient. The next time you reach for your wallet simply imagine losing it every day. This is one of the ways it feels to have MS. Use this comparison and go forth with empathy for those whose wallets, and health, are permanently misplaced.