There are many things that those of us with chronic illness wish our healthy counterparts could understand. There are some things the healthy will never understand until/unless they also become chronically ill. We certainly don’t wish that on them. There are, however, other things that we believe the healthy can take the time to try to understand. Here are a few things that those of us with chronic illness wish healthy people understood.
Last year I shared 6 Things the Chronically Ill Wish the Healthy Understood, today I’ve got 10 more.
1. That we’d be there if we could. We’d much rather be there with you having fun, or supporting you than staying at home on the couch or in bed. We don’t stay home because we are lazy or because we don’t love you or don’t want to support you. If there was any way we could be there with you, we would be. We hate feeling like flakes or worrying that our friends and family think we don’t care about them. We miss you.We hate that you think we don't care, or that we are flakes. We miss you. #spoonielife Click To Tweet
2. That we are not lazy. If we had our way we’d be out there working just as many hours as you do. Some of us do it anyway only to have nothing to give you on a personal level. We have to make choices between work and social, between fun and commitment. The things that are required of us will almost always win over the things that are not. We do as much as we can as often as we can, and often we pay for it.
3. That it’s not all in our head. Just because you can’t see it, doesn’t mean it isn’t real. We struggle enough with accepting an illness that can’t be proven through blood work or imaging tests, so we get that you may have a hard time accepting it, too. It’s important that you know that we did not make this up, that it is real, and it’s, even more, important that you treat us as if you believe us.
4. That we aren’t just whiners. Most of those with chronic illness won’t even mention their illness or their pain unless they have to. When someone with chronic illness tells you they are feeling bad, they are really feeling bad.We try to avoid talking about it because we realize that you don’t really want to hear about it. However, there are times when it will come up. When you ask where we’ve been or why we haven’t been around, we will give you an honest answer, and we hope that you will take the time to listen.
5. That we need to be able to talk about how we feel with you. We know that for the most part you don’t want to hear about how we feel. Quite honestly, we get tired of hearing it ourselves, so we rarely talk about it with anyone besides our doctors. But, we do need to be able to talk about it, we need your permission to talk about how we feel, not just physically, but mentally. We need to be able to share our fears with you, so please give us permission.If you love us please give us permission to talk about it. #spoonielife Click To Tweet
6. That medications don’t fix everything. If you had any idea how tired we are of those Lyrica commercials. Yes. We’ve tried it. If we’ve been diagnosed, we’ve tried the meds. Don’t you think it’s the first thing the doctors suggest? The meds don’t work for everyone. In fact, most medications only work for about 30% of people and only improve their symptoms by 50%. And, that’s if the side effects aren’t so bad they can’t tolerate them. Often, the medications are worse than the symptoms we started with.It doesn't matter what the commercials say, medications don't fix everything. #spoonielife Click To Tweet
7. That no matter how positive our attitude is, we still hurt. We do our best to stay cheerful and to keep a smile on our faces. We do this for you and we do it for ourselves. If we allow negativity to overwhelm is we will feel worse. However, just because we wear a smile doesn’t mean we hurt any less. If our pain shines through so that you can see it that just means that it’s much worse than normal. We do our best to keep the pain from breaking through the mask.We do our best to keep the pain from breaking through the mask. #chronicpain Click To Tweet
8. That we want to work/ go to school. We want to have a normal life. We want to do the things that you do, and yes that includes work. If we aren’t at work that doesn’t’ mean we are off enjoying our day, catching up on soaps and eating bonbons. In fact, the opposite is true. If we could get up to do anything we’d be doing it. If we could be at work, we would.
9. That our bodies and minds often don’t match up. When you live with a chronic illness there are many days when your mind works and your body doesn’t, or your body works and your mind doesn’t. Sometimes one is enough to get some things done, but not enough to get many other things. We may have the energy to do things but we can’t focus long enough to remember what we needed to do. Or, we may have the focus, but no energy.
10. That chronic fatigue is not about not getting enough sleep. We sleep as much as we can. I know that I personally live with only 12-hour days (between the time I get up in the morning and the time I begin the process of going to bed). We do our best to get more sleep, but many times our bodies simply don’t allow it. Or, when we do sleep we do not get restful sleep, therefore we wake up just as tired as we were when we went to sleep.
What else do you wish the healthy people in your life understood?