Tangled In the Web of Comparison
One thing that’s been hard for me about having MS is that I often feel a disconnect from other MS’ers, only because some feel the need to compete with their symptoms. As we all know MS, is different for everyone; each of us has different symptoms and various problems. Some have relapse-remitting (like me) while others have more aggressive forms such as secondary-progressive and primary-progressive. Some may say, well, you have an “easier” type of MS, so you have no idea. And, you’re right, I probably don’t, but I would never try to compare my current condition with what you’re going through.
Unique personal struggle
I want to be a friend to listen and sympathize, to let you know I understand some of what you’re going through. Having MS for me has been a unique personal struggle with many problems of my own. Just as hard as other’s symptoms have been hard on them, mine are also hard on me. They have been a part of my life for over a decade now, and I have had my fair share of difficult days. And, sometimes with MS, it can seem like others are competing or trying to one-up what you’ve been through. I think what gets to me most is when people say to me, “Just wait until…”.
Those without MS
I’m not always one hundred percent honest when asked by others how I’m feeling. I don’t like to complain because it’s not in my nature, and I don’t expect them to understand. It also frustrates me when people without MS try to offer support and tell me how they are tired too, or they are hurting as well. So sometimes, instead of telling them, I try to avoid that subject altogether and say I’m doing well. I know it's not their intention to upset me, but their normal symptoms to my MS symptoms just can’t be compared.
With others with MS though, I never know how to approach the situation when people try and “one-up” me with their symptoms that are worse than what I’m currently experiencing. My first response when someone says, “well, just wait until you can’t walk” or “just wait until you can’t ever get out of bed,” etc., is the shock I suppose. I don’t understand why when talking to someone else with MS you would say such things. Talking with someone else with MS should be somewhat of a safe place. A place of understanding and compassion because we know to an extent what the other is going through. A place to feel comfortable. But, I’ve noticed that’s not always the case. In fact, often its the opposite.
A healthy future is not promised
I’ve had relapse-remitting MS for 13 years, going on 14, so although my struggles may not be yours, they have been a significant and often challenging part of my life. They have changed me, and have caused some very unpleasant years growing up. I was diagnosed at the most vulnerable time in a teenager's life, and that was a huge thing to accept. My body is living proof that I’ve been through a considerable amount growing up. I’m stronger and better for it now, but it hasn’t always been that way. So, it hurts when others with the same disease try to act like what I’ve been through can’t compare or tell me how much worse my days are going to get. Little do they know I wake up every day and wonder if it’s going to be the day I wake up and my legs don’t work, or I wake up and can’t get out of bed. I still continuously have my daily fears and struggles. A healthy future is not promised for me, and I know that, so I don’t need everyone else putting that in my face. I promise you not a day goes by that I don’t worry about the bad days that will inevitably come.
Being anchors for each other
It breaks my heart that I even have to write something like this because it shouldn’t be this way. I also don’t write this for pity or to whine, I once again want to vent, because I’m sure I’m not the only one feeling this way. I think we should all cling together and support one another for what we are going through at the moment. Be there to say, “Hey I’ve been there, I know how hard that is.” We should be there as anchors for each other and as a warm, friendly face or comment that is filled with comfort and knowing. I write this to say, please be mindful of your thoughts and comments. We may not all agree or completely understand each other’s various symptoms. I get that. However, we all have one thing in common; something significant and life-changing. Multiple Sclerosis. It’s not something to compare or say to the other how what they are going through is so much worse.
Hear and be heard
I don’t want to get tangled up in the web of comparison, of who’s is worse or who’s is better. I want a community to vent about my issues and feel heard and understood. It’s disheartening to feel that others in your community are trying to manipulate your experience and make it seem like it’s nothing. It’s crucial that when we open up about our feelings that we all feel accepted because when we open up, it doesn’t come easily. I am not looking for attention when I write about my experiences. I’m just looking for someone to listen who’s been in the same boat. That’s why I joined this community after many years of hiding behind my MS. I was ready to open up and know I wasn’t alone. Again, it’s not a competition, it’s a disease, and we’re all in it together.
How many specialists did you see before finding "The One"?