When I was referred to an orthotist for an AFO, I was eager and excited. Not only was I acknowledging my multiple sclerosis diagnosis, but I was taking steps to help control it. I had never been to an orthotist before, but this particular practice had been recommended by both my physical and occupational therapists.

My appointment was at Kenny Orthopedics. We were still under strict Covid restrictions and they were only allowing one person in the waiting area at a time. I had to sit in my car until they were ready for me. As I entered the building, I only passed one other patient. They were an amputee in a wheelchair. As I entered the waiting area, the only other patient I encountered was also in a wheelchair and missing a limb. There were a ton of pictures on the wall. In every one of them, someone was wearing a prosthetic. I began to feel out of place. I was here because I needed a device to hold my foot in place when I walked. Most of these people were here because they actually needed a foot! I do not know why, but I felt bad for being able to walk in.

My first thought was, “At least I am wearing long pants”. At least my legs were covered. No one would know I was not an amputee. Maybe I was wearing a prosthetic like them and the people in the pictures on the walls. They would never know I still have the legs I was born with. For some reason, I felt as if I was being judged for being there. For a moment, I felt bad. In another sense, I felt guilty. I was taking up the staff’s time. These patients had their limbs robbed from them by injury or disease and needed help more than I did. I should not be here distracting their provider’s attention away from them.

Then it dawned on me. I was there for the same reason. A disease was robbing me of the use of my limbs and I needed help. MS was robbing me of the ability to walk. I was validated in being there as much as anyone else.

I still go over in my mind why the people and pictures on the wall made me uneasy. I do not feel that people who need to use a prosthetic are any worse or better off than me. We all have unique circumstances. They have experienced physical and emotional traumas that I will never be able to fathom. Just as others will never truly understand the traumas MS has caused in my life.

It embarrasses me to admit that part of me was even jealous to see pictures on the wall of amputees running while wearing their prosthetics. They had lost a limb and were still able to do the thing they loved. Multiple sclerosis would never let me run again no matter what kind of device I was given to wear. *See Note

I have never personally been a fan of “it could be worse”. I truly hate the phrase, even before MS came along. I hear it a lot from my patients at work. They will be lying on the exam table with a broken leg or pelvis. They will start telling the story of what unfortunate incidents led to them being there. Then, there will be tears as they explain how they are a single parent with a toddler at home and no family nearby. They are unable to work because of their injury and are fearful of losing their job. Then, without fail, they mention someone they saw in the lobby with worse injuries and that they should not be complaining because “it could always be worse”.

My supportive response in these situations is always a very firm “stop”. I explain that whatever they are going through has nothing to do with anyone else. They are in the thick of it and they should never undermine their own situation by comparing it to someone else’s.

What someone else is going through has nothing to do with you. It can not and should not provide you with any relief to see someone who appears more broken, physically or mentally, than you are. Not only that, but, saying to yourself “it could be worse” negates your own emotions and undermines your own experience. The reality you are facing has nothing to do with anyone else’s struggles. They are your struggles and should be acknowledged fully.

For all the physical and mental hurt that multiple sclerosis has put me through, it has nothing to do with anyone else. Even if I was able to put into words what it is like, no one else can feel what I feel. Just like I cannot feel what anyone else with MS is going through. No matter how much worse someone else’s pain is, you can only feel your own. To see someone whom I perceive as having a more difficult time and tell myself “it could be worse” dismisses my own problems as insignificant. Saying “it could be worse” means the other person’s problems are more important than your own, which is not the case.

To tell someone “it could be worse” is to belittle them. A person suffering from a traumatic injury or a chronic illness is most likely fully aware of what could be. That does not make what we are presently going through any easier. I know I could be in a wheelchair because of my illness. I also know that when I am lying on the floor in the fetal position because of MS, telling me it could be worse is not what I need to hear and is not going to make me feel better. It is not what anyone needs to hear.

Even my neurologist was guilty of this. One day at an appointment, as I sat across from him in tears, he told me he understood how upset I was. Then he proceeded to tell me about his new patient. A thirty-something-year-old female who was an avid runner. She was just diagnosed with MS and the chances of her ever running again were very slim. This story was meant to make me feel better. I suppose because I got ten extra years that she did not get. I did not feel better. I felt worse because now I was sad for her, too. I also immediately felt less important to him as a patient.

One of the things therapy has taught me is to live in the present moment and not pine for what used to be. Living in the present also means not dwelling on what could be. It is okay if you do not know what to say to someone who is struggling. Most often, we really just need someone to listen. We do not need advice. We need to hear things like, “I am here for you”, “I’m listening”, and “I am sorry you are going through this”. Please stop telling others, and more importantly, please stop telling yourself that it could be worse. Of course, it could be worse. But, acknowledging what could be does nothing to help your current situation. If anything, it delays healing.

*Note. I nearly struck this paragraph a few times. I was and still am, worried that it might sound insensitive to amputees, especially those that are no longer able to do the things they love. I mean no disrespect. I can not imagine the physical, emotional, and psychological pain one goes through when losing an arm or a leg. Appropriate or not, these were the genuine thoughts that went through my head. These thoughts have stuck with me long enough that I felt the need to share them out loud. If anyone who reads this finds it offensive, I will be happy to delete it.