Tips to Help Others Understand the Struggles of Cushing’s Disease
Support systems don't just happen; sometimes you have to help them help you
In the Cushing’s disease and pituitary tumor community, families, friends, and significant others sometimes provide limited support, if any, to patients. There are many reasons for this, such as a patient’s lack of physical symptoms or even a misdiagnosis. But the main issue, I believe, is that the others don’t understand what this disease is, as well as how it affects the mind and body.
Following are a few tips to help family and friends gain the understanding that can help them support us better.
First, send the same Cushing’s information that you’re using to educate yourself to others in a text or email with a link. When others lack information, it can lead to a lot of communication problems as well as confusion. Make it simple for them, and don’t overload them with information on everything about the disease.
In communication, it’s also important to give them the right information. It can be hard to give an accurate description of what your body is going through, but you also have to remember that the people we’d like to support us are not mind readers. Because of this, make sure to do your part in giving information that is clear, pertinent, and accurate.
After providing them with information, present them with the option of going to appointments with you. Not only is it good because of the support, but also it lets them hear from a specialist. Although I believe patients are the experts of their own bodies, sometimes it’s helpful for someone with licenses and certification to speak on your behalf.
This can provide two results. First, it can confirm the information you’ve been providing them. Second, the time sitting in a medical room can affect their view of your situation. While waiting for your appointment — whether it’s with a primary physician or an endocrinologist, and whether you’re getting lab work or an MRI — there’ll be time for questions.
My last tip may be a bit difficult because our emotions are involved, but you may need to accept that they aren’t able to support you during this time, at least not well. This does not mean your family or spouse doesn’t love you, and it doesn’t mean your friends don’t care. But they may not understand, and you have to be OK with this. It’ll do you no good to be concerned about their lack of the support. Instead, you might check out some good online support groups.
There are other ways to provide information and help to those we want to support us. But don’t forget your most important goal: healing and getting healthy.
Note: Cushing’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cushing’s Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Cushing’s.