Family: The opinions or thoughts that my family have about me are very important. I need for them to understand some of what I’m going through, it’s helpful when they are familiar or concerned enough with my situation as they can help me manage life better (even if I try to revolt, deny, or refuse to listen to them.) However, I don’t want them overly concerned or worried about me. I try my best (though not always feasible or effective) to remain optimistic and “ok”. I know that I’m not completely responsible for how or what they think, but I do attempt to have a little control by limiting and downplaying how much I let them know. Their opinions can influence me quite a bit. When negative comments are made, either consciously or accidentally, it hurts a lot and admittedly decreases my mood and confidence. I don’t want to embarrass them with my issues and am not always open to hearing reminders of what I should or shouldn’t do or what I do or do not have (ex/ med equipment) regardless if their comments are true or false.
Current Healthcare Team: Similar to my family, my medical team’s thoughts/opinions are extremely important to me as well and carry a high level of importance. I feel responsible in making sure that my doctors, nurses, etc.. understand the reality of how I’m feeling, what is medically happening with my health, and at times the impact my health is having on my quality of life. I feel that it’s essential for us to have open communication and mutual respect in order to best meet my medical needs. However, for this to happen, I also try to be considerate in not wasting their time or abusing our lines of communication. I find that I feel the need to be careful and monitor how I explain things as I don’t want them to consider me a whiner or complainer, but do need them to “see” what’s happening so they have a better opportunity at helping improve my health, Sometimes I also feel the need to downplay the situation as either I “should” be able to handle more of this on my own or I want to avoid a response that I really don’t want to hear.
BOTH my family and my current health team have key roles in how I react to my life. Their words and actions can be encouraging, motivating, comforting, and grounding or they can be like daggers in my heart, disheartening, frustrating, or bone crushing. I prefer them to be realistic, understanding, and honest. I am alright with hopeful comments as long as they don’t go overboard with them or are not attempting to build false hope for themselves or me.
Some friends and/or familiar acquaintances are aware of my health issues and understand at least part of what I am dealing with. This category can include other (non-routine) health providers, past colleagues, friends from the past, or people met via online support groups. Personally, I want them to think positively and highly about me. I feel the need to “prove” why I’m unable to work, why I can’t participate in certain activities, attend some events, or why I need their help- but I also know that it’s impossible and takes too much energy or time. I want them to believe that I am strong and patient, that I’m optimistic and not a quitter. I attempt to stress my desire to live life, so they don’t think I’m just boring, lazy, or depressed. I have been finding myself trying to push away, distance, or ignore them, as avoidance is so much easier than dealing with how to communicate and present myself around the people in this category.
- Examples: I always love seeing past students. This past weekend I saw a student that was in my 1st ever class (Year 2000/2001). I haven’t seen him in many many years. At first I wanted to call him over, ask how he was, etc.. but instead I hesitated and said nothing, didn’t even make eye contact or say hello, because I didn’t want him to think negatively about me since I was riding on the store’s scooter. Thinking back on it, I regret not speaking but at the same time I’m not sure if I would have changed anything if the opportunity presented itself again. I want to be remembered as strong and healthy, a positive role model, not someone that’s let my health come down to this.
- During the past few months, I have been limiting how often I visit and comment online in the support groups because it’s become too difficult to be positive and build others up when I’m unable to believe or hear the exact same messages for myself. Of course if I’m specifically tagged in a comment or question, I will answer it as honestly as I can as I ultimately do want to continue to help others. Usually if I am tagged in a post, it’s relating to questions or comments about medical procedures or medical equipment. I can easily handle these topics as they don’t require emotions.
What about strangers and people I know that are unfamiliar with my health issues opinions of me?
I should not let the opinions of people in this category bother me too much, as I know that they don’t know anything about me and will likely never see me again. I try not to let strangers’ thoughts impact my actions or decisions. Genuine positive feedback from anyone, including people that I don’t know, is alright. Unfortunately, I’m not always successful with ignoring the negative comments, facial expressions, etc that I face. For example, riding on the scooter at the grocery store. Each time that I am honest with myself about needing to utilize a scooter while grocery shopping, I have to overcome my fear of how others will look at me. Sometimes, I try to make excuses of why I shouldn’t ride one, but my family (especially my daughters) encourage me. They tell me that I shouldn’t be worried about it, that they don’t care what others think and I shouldn’t either. I’ve learned that riding the scooter is necessary right now if I’m going to allow myself to help grocery shop as otherwise I get too winded, tired, or lightheaded. For the most part, people don’t pay me any mind - at least not in a visual way. However, there’s always one or two that give me dirty looks, like I’m being disrespectful, lazy, etc and the looks and attitudes that they give are very hurtful. The judgements remain with me for the remainder of the grocery trip and usually the rest of the day. Additionally, they make me more apprehensive about using a scooter the next time. I try to psych myself, prepare myself ahead of time, with what I will say if someone looks negatively at me while using the scooter - however, in the moment I usually grow silent (too chicken I guess) and choose not to say anything. I feel as though I should be strong enough to educate them on invisible illnesses and why I am in need of the scooter - but it’s hard to justify myself when I’m already self conscious about riding the scooter. Riding the scooter is essential for helping me feel useful once again within my family, but it worries me that someone else may need it even more than I do, which decreases my confidence in doing what’s in the best interest of my health.
In short, be kind, be nice, and be supportive. Don't judge others as no one knows what it's like to walk in the other one's life. If they are like me, they are already judging themselves and perceiving other's possible judgements at the harshest degree.