When I was first diagnosed with Juvenile Rheumatoid Arthritis at 14, I looked forward to finding anyone who had the same condition so I could talk to them. Somehow I knew that meeting someone who was going through or had gone through the same things I was going through would make me feel better. I soon found out that that is not always the case. It really depends on the person. Some people, blogs, websites, magazines, support groups, etc. focus more on the negative part of a medical condition. When you’re looking for support, someone to cheer you up and hold your hand, talking to someone who focuses on the negative can really destroy you. I’ve been very blessed to have an extremely awesome support system, so I learned early on that just because you can talk to someone about your problems, doesn’t mean you should.
When I was diagnosed, I lived with my aunt in Mexico City and was very depressed. My aunt met a woman in her 40’s who had RA for several years and she looked fine. Since I was still in a wheelchair and being hand fed, my aunt introduced me to her to give me hope. I have to say, just seeing her made me feel better about my future. That is, until she started talking. I know she was trying to prepare me for what was to come, but she made it seem like it was the worst nightmare anyone could ever have to go through. All the meds, side effects, surgeries and people not being supportive. I was even more depressed than before I met her. I couldn’t understand, she looked fine to me (at least MUCH better than I was) but the way she talked about it made it seem like the end of the world. When I told my aunt, she reminded me this lady had been sick for over 20 years, and medicine had advanced a lot since. My aunt always knows what to say because she herself suffers from Chronic Thyroiditis (Hashimoto’s Disease) since she was 14; so she knows how to relate to someone in a bad medical situation.
I realized talking to my aunt, who didn’t have RA but understood living with a chronic illness, really did make me feel better about my future. After all, when she was diagnosed, they didn’t think she’d live to see another year. Most of the times she had supportive things to say, things to give me hope and make me laugh. I wasn’t the easiest of patients though, I was young and scared and some days all I wanted to do was sleep and cry. My aunt wouldn’t have it, she’d make me get out of bed and go grocery shopping (in a wheelchair) with her, or talk to her while she did her chores, anything to get me out of bed. I’d get so angry at her, at that point I thought she just didn’t understand my physical and emotional pain. I’ve since come to understand she understood perfectly well, and was trying to ease my emotional pain by getting my mind off of my own misery and showing me there’s more to life than being sick. I know it was unbelievably hard for her, because she loves me, to see me in pain and not give in to her own pain, but I gotta say what she did absolutely worked.
My mom suffers from Lupus, she was just diagnosed a few years ago, so I tried to be the support for her that my aunt was for me. Gave her pointers on how to make her life easier, reminded her of the importance of keeping up with medicines and appointments and staying positive. It wasn’t easy on her, because she now understood the physical pain I went through everyday; so she became depressed. I told her not to worry about me, at that time I was doing excellent, my RA was under control, I had a good job, my own appartment, and was going to college. Life was awesome! I told her, it’s not always a piece of cake, but you push through it, and it’ll always be worth it. She started doing better, but then she joined a Facebook group that was just the worst thing that could’ve happened to her. She’d call crying at least once a week that someone else in her group had died. I couldn’t understand why she just didn’t leave the group, I’d tell her “but you’re ok, why are you seeing cases that are worse off than you and thinking that’ll happen to you too?” With these cases, you don’t know the details, if they had good medical care, or kept up with their meds. There’s no need to make yourself anxious over something you don’t have all the details about. I strongly suggested she ditch that group and look for a more positive one.
In this life, I’ve encountered many people with my same condition. I’ve joined blogs, read magazines, joined Facebook groups and more; but I don’t always stick around. I’ve come to learn that negative and positive thinking is contagious. I try to spread the positive, but sometimes some people are so wrapped up in what they’ll never get to do or the pain they’re going through that their negativity overpowers your positivity. It is also important to be able to give and get tough love, sometimes you’re so wrapped up in what’s wrong, that no amount of positive talking will help. It is then, when you need people around you who won’t let you lay in bed everyday just crying yourself to sleep. It’s happened to me a few times, and I have had amazing people around me who wouldn’t leave me alone no matter how much I told them I wanted to just sleep. Talking to people who have gone through or are going through what you’re going through is EXTREMELY helpful, but you have to be cautious with whom you talk to, sometimes someone who isn’t going through the exact thing you’re going through might be just what you need. We have to look out for ourselves, our emotional and physical well-being, and if something or someone is bringing us down, we need to run away in the opposite direction as fast as we can.