Dealing with the symptoms, side effects of treatments and just getting through each day can be a tough process, especially with idiopathic hypersomnia (IH). It’s totally normal for day to day life to bring up emotions – anger, sadness, grief, loss… or maybe even positive emotions like peace, love, gratefulness and joy. But sometimes when that anger gets even greater than normal, or life seems a little bit hard, then doing something about our frustration becomes a necessity.
These tips were recently shared in the Facebook Group by Katie. With her permission I am re-sharing them here for you to benefit from too.
At some point, we need to realize that anger generally arises from miscommunications.
**Learn to advocate for yourself as an educated patient**
I can’t stress this enough for your own benefit and to gain respect from others for our disease as a whole. This does NOT mean acting defensively. Sometimes this means silence and disregard. Ask questions, have discussions, SPEAK UP in a calm manner. Confront the miscommunications, rather than the person, and clarify.
–We each represent everyone else because we share a misunderstood disorder. Please remember that the next time you lose your cool. Learn to let things go and save your energy for more worthy activities.
–Realize that most of the frustrating comments made by friends and family are an attempt to help us, not upset us.
–Those who have not endured a chronic illness will never understand what you are going through – do not expect them to. Do the best you can to explain your perspective, and let it go when you don’t get the response you want.
–It’s not our fault that we have IH, but take responsibility for the effects we have on others’ lives. IH is not an excuse. We’ve been dealt a very tough hand – but that does not give us the right to place fault on others. Do the best you can with what you have and express your limitations to others.
Last but not least:
–For every frustration you encounter, take the opportunity to change minds, educate and represent the strong IH voice you represent for all of us.
Katie also added in the comments a point specifically about miscommunication with doctors:
Regarding miscommunications with doctors – clarify that your tiredness is not normal. You are at a doctors appointment for a reason – something is wrong. Be friendly, but do not let friendly banter like “we’re all tired” trivialize this condition. While trivializing tiredness is not the doctors intention (they are only trying to make you feel comfortable), smile and say “well, let me explain.” Explain why your tiredness is different. Give examples of how many hours you can be productive, what happens if you try push through it, keep journals, describe how you physically feel to the best of your ability. Doctors can only work with fairly concrete info. Thought this was an extra important note because so many of us never knew what “normal” was and have lost respect for ourselves through these miscommunications, thinking we were just not tough enough and should stop complaining. Communicate and self advocate
This is just one example of the topics discussed and shared every day in the Facebook Group. If you suffer from Idiopathic Hypersomnia and haven’t already joined the support group then make sure you do it now, it only takes a couple of clicks:
» Major Somnolence Disorder Facebook Support Group for people with Idiopathic Hypersomnia