As we head into a holiday weekend for those of us in the U.S., many are thinking of summer fun: barbeque cookouts, picnics, pool time, visiting with relatives, traveling, etc.
Holidays can also be an emotionally challenging, if not painful, time for chronically ill patients. Sometimes friends and relatives can have expectations of their chronically ill loved ones that are not realistic.
A chronically ill patient/chronic pain patient (endometriosis induced or otherwise) often cannot "keep up" with healthy peers on everything expected of them.
This can cause hard feelings, misunderstandings, tension, and isolation.
Some chronically ill patients push themselves HARD to "keep up" with "everyone else". Others lie low and avoid holiday visits because they find them too draining. Others are somewhere in the middle.
Self-care is very important! LISTEN to your body. If your body gives you signs and symptoms that it's hurting or tired, perhaps you may wish to modify your plans to fit your body's capabilities. Be flexible. The world will not come to an end if you don't "make everyone happy". In fact, making "everyone" happy is quite impossible. You can't please everyone.
Be true to yourself. Know your limits. Know when to quit. What fun is overdoing over the holidays and then paying for it for weeks (or more) afterwards?
Learning how to pace yourself can be a challenge. Gain support for yourself from other patients with the same or related illnesses. This can be from face-to-face support groups, emails exchanged, phone calls, instant messaging/chat rooms, message boards, blogs like this, etc. Suffering in silence isn't healthy. If you reach out to find even one person who "gets it", it will be well worth the time/energy invested.
For those of you who are about to celebrate the holiday weekend in the U.S., try to implement strategies that encourage self-care. For those elsewhere around the world (and I notice from my live traffic map that this number is growing!), it doesn't take a holiday to cause people to display unrealistic expectations of chronically ill patients. Assert yourself when needed. Being polite but firm & honest about your limitations can make things easier (or harder) in the short run, depending on with whom you are interacting. Doing this almost always works out better in the long run, though.
Don't be afraid to say "no thank you... I can't make it" if an activity is beyond your limits. You can't please everyone.
Please have a happy and safe holiday weekend and find something (just about anything) that brings you joy and do it/use it). Don't feel guilty if you worry people will "judge you".
For those who are traveling, try not to overdo things and travel safely this holiday weekend.
Self-care is so crucial to managing chronic illneses.
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
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3 comments:
Great post. My in-laws totally don't understand when I say "no" or end up bailing on something bc I'm 'not feeling well'. I'm sure they take it personally, but the truth is, often times I just don't feel well enough to drive the 1 1/2 hour there and 1 1/2 back for a visit on my precious down-time. And sometimes when I do get there my stomach hurts so much I just have to lay down. How do I get them to realize that I'm not some disfunctional person, but that this is part of my illness?
Alicia,
Thanks! It can be really hard because those who are not chronically ill can have a hard time comprehending how profound chronic illness/pain from endometriosis and other illnesses can actually be. I find that "honesty is the best policy".
This is especially difficult with invisible illnesses, where the patient may look "fine".
I suggest sharing "The Spoon Theory" with friends and relatives as a means of helping them understand the limits are real and following the body's cues is crucial:
http://www.butyoudontlooksick.com/the_spoon_theory/
You may very well NOT be able to get others to really understand just how debilitating endometriosis can be. However, you can control your response to a request for something that your body (and/or your mind) can't handle.
A one day visit can lead to weeks (or even more) of pain afterwards. Is it worth it? No. Nothing that can potentially invoke permanent pain or pain for weeks after the visit or outing is worth doing, in my opinion.
Do I feel badly when I can't particpate? Yes. Is forcing myself to do something very painful or tiring what is best for me or my immediate family? No. Do people always "understand" when I say no. No. Is there anything I can do about it? Sometimes. Can I control what other people think? No. Can I just focus my energy on doing what's best/what will not push my body too far? Yes. That's what I do. Sometimes I miscalculate and go overboard. Then my body rebels. If I do so, it teaches me a lesson. The next time around when such an invitation is extended to me, I will answer "no thank you" because I will have learned my lesson.
I have found (personally and from listening to my local support group members) is that it's very common for relatives (and employers) to misunderstand when a 'no thank you' reply is given. That's OK.
I have made peace with that. It think honesty about limitations (without volunteering too much info --- as when interacting with empoyers as an example) is the best policy.
Honesty works.
Jeanne
It took years for me to understand that I was not going to be able to convince my parents that I was too sick to attend some family functions. I even went so far as allowing them into the examination room with me, letting them ask questions and watch his examination. What they came away from the experience with was that "She is on too many drugs and she would be alright it she would stay sway from doctors." I learned to take care of me. If I cannot attend a function, I don't. I agree, Jeanne, honest is the best policy. I harbor no quilt. I hang up the phone and continue my day. Even if that means staying in bed all day. Sometimes I am recovering from a previous outing and sometimes I am just not well. We have those days. We get through them and we live our best life.
Mckay K
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