#explaining symptoms

Hi, 

Socializing can be really hard and exhausting.  It is definitely something that I struggle with a lot. 

There are places like Stickman Communications ( stickmancommunications.co.uk ) that have resources to help relaying information about your health more easily. They have cards that you can choose from to explain different conditions or symptoms. (The thumbnail picture for this blog on mobile is actually a picture of one of the cards they have describing fibro.) That way you don’t have to think about how to respond, or go through as much emotional energy dealing with it. I know that only works for people who are comfortable with handing/showing someone a card, and you would need to keep them on you, so I realize that is one extra thing to remember and/or have the pain tolerance/energy to carry around.  Also you need to be able to order things off the internet, which is not always an option for a lot of people - but if it is something that interests you, you could use it for inspiration to make your own if that is within your abilities, or have someone write some up for you, if you have someone who can help.

Another thing that I would like to mention is that if someone asks you about your health, you have all right to say you don’t want to talk about it. You may already be comfortable doing that, and if you are, that’s great, but I thought I would stress it because all lot of people feel like they are obligated to answer anybody’s questions about their health - even if they are incredibly invasive and draining questions. This is your life, your health, and your private information. You have no obligation to tell/educate anyone about your illness. If you want to than absolutely do, but it is your choice. And anyone who makes you feel pressured to tell them things you are not comfortable with are being disrespectful to you, and are out of line. Even if you would normally feel okay opening up to that person but you don’t have the energy or are not in the mood to talk about it in the moment. It is perfectly valid to say that you don’t really feel like you want to talk about it right now.

For socializing with existing relationships, try to be gentle with yourself, respect your limitations and to be open with the person(s) (as much as you can) of what you are experiencing.

Try limiting interactions to shorter time periods to conserve energy, and/or do something with someone that you find easier/less draining. Like maybe just chilling and watching a show with a person (if that works for you), instead of just talking, so you can rest your body and mind a little, but you are still getting some time with the person. It may seem strange/very short lived at first, but sometimes having at least that interaction can feel nice, but hopefully not have as much lasting negative effects.

I used to not tell people what I was going through, because of the stigma and responses/disbelief I had gotten from people in the past, the fear of what people would think and the fear that people that I care about would leave me. It isolated me, and I kept pushing myself too hard, because I couldn’t properly take care of myself while they were around, since I was too busy trying to be functioning enough for them.

I since realized that I had to start taking care of myself all the time, and not just when I was by myself. I had to fully accept my limitations in all moments (not just when I thought it was okay to accept them). It is HARD, and it is definitely a work in progress, but now I have a much stronger and healthier relationship with the people who truly care. I can say “I am super foggy today, and I am not understanding what you are saying,” and they are patient with me. They walk me through step by step, or we decide together to talk about it on a different day. In the past I would have just pretend I had followed what they had said - too embarrassed/ashamed that I wouldn’t speak up - and then there would be consequences later (like me getting down on myself for it, or others expecting me to have known that information, or me saying a response I regret etc.).

If you have a day that you are able to express yourself fairly well, writing a letter/making a video/voice recording etc. may be helpful. That way you can try and get across some of the things that may be harder to say day to day or to their face. You could even make a generic one, and then you can send it to whoever you want, in order to give them some insight. You can also break it into many days, so whenever you have an idea or point you want to make, just jot it down for later, and slowly assemble the completed project. That can be a great way for you to feel like you have actually expressed something that is important to you, but also fits in your ability range. And then the person will have a better understanding of you so interaction in the future could potentially be easier or make the relationship closer.

Finding other people who understand can be another thing that helps reduce that feeling of isolation from others. I find that the internet can be a wonderful resource to help in that way. Finding communities of people going through the same sort of things, and people who don’t judge, because they understand exactly what you are going through.

If you have the energy/ability to type, and have a reliable access to internet, there are places like the Big Spoon, Little Spoon which is an inclusive community for people who are mentally ill, physically ill and/or disabled, run on the Discord server. That way you don’t even have to leave the house, and you only have to go on whenever you want/are up to it. You can choose to chat, or you can just read the conversations  - whatever you are up to in that moment. It can be validating to see people talk about the same issue you are facing, and what their experiences are. There is an app for Discord, or you can just do it on the web. The link to connect to the group is: https://discord.gg/hzSkdWJ . I know there are other similar groups on Discord, but this is the only one I know of personally.

Sometimes if I don’t have the energy to socialize, but am feeling lonely, I will just scroll through blogs on Tumblr about chronic illness/fibro or other similar blogs. Reading other people’s experiences that are similar to your experiences can be incredibly validating, and it takes smaller amount of energy (relatively speaking). I found that it helps me to have greater respect for myself, and therefore I am able to be more assertive of my needs with future interactions. (It can help me realize that I have a valid reason for what I am feeling/experiencing, or give me words for something that I could never explain previously etc.) I will even save posts to my phone for later, and show/send them to those people that truly care, to give them some more insight, without having to figure out the words, or how to bring it up in conversation.

If you have more specific situation in mind that I haven’t touched on, or any other questions, just let me know, and I will try my best to help. :) You can also send me a message anytime just to talk. I am awkward, and struggle with socializing as well, but then you never need to worry about me judging you, or the conversation being awkward on your account because we both will be stumbling through it. :P

Today I had to fill out my forms for the accessibility office at my new school. They wanted me to explain my disability, and how it affects my school life. 

As much as I have come to terms with having a chronic illness, it never ceases to bother me when I have to explain in detail what it entails. Just because I've grown accustomed to being constantly tired, and almost always in pain, doesn't mean I want to have to go into detail about it. 

It's very easy to start downplaying your illness when you have to explain it. It's easy to just focus on what a good day is like, rather than being honest about how bad it can get. Its easy, and more comfortable, to downplay hour hard it can be to get things done during a flare up. 

But that's the LAST thing you want to do. You need to think about what it is like on a bad day. Think about the little things. How hard it is to get out of bed, to make breakfast, to get dressed. How hard it is to sit for the whole car-ride to work/school. Sometimes it can be difficult to remember the small details. In that case, keeping a journal next time you have a bad day can be really beneficial. It will open your eyes (and your doctor's eyes) to how you feel when things get rough. 

When it comes to filling out forms about your illness, you need to be specific. For mine, I had to explain how my illness impacts my ability to write, to read and learn material, to sit for long periods of time in order to study ect. As much as I don't like to have to remind myself of how bad it can be, it's extremely useful in gauging how much you can do on a bad day/how much help you need to get the things done that need to be done. 

Being honest with yourself about your illness is important, but it is also important not to downplay how bad it can be. The last thing you need is to overestimate your capabilities and end up overwhelmed. That doesn't mean you should exaggerate your illness or symptoms, just don't overestimate them, or assume most days will be good days. If you usually nap when the pain gets bad, then you need to be honest about that, rather than assume you'll be able to hold off napping till later. Don't expect yourself to be able to handle more simply because you have more responsibilities (such as a job or classes). Your symptoms are your symptoms, and your body will react the way it usually does, and you will need to deal with them accordingly.