A Patient’s Perspective
What is it like to have chronic IH? Sometimes, it’s hard to understand what a friend or loved one is going through with this illness. The following are some helpful suggestions for friends, family and caregivers submitted by IH patients.
1. Be a good listener.
It’s difficult to watch a friend or family member deal with a chronic illness that is not well-understood. It can be an incredibly frustrating experience for everyone involved. Sometimes, the best thing you can do is simply listen, without any judgment, and understand that the person who you care about is still there, despite this illness.
2. Avoid comparisons.
Chronic IH is a very real and disabling illness. But its effects are not necessarily seen on the outside. A person with chronic IH may look okay but feel terrible. As a result, the seriousness of chronic IH is often downplayed. Old names for the disorder like “pseudotumor cerebri” and “benign intracranial hypertension” only add to this misinterpretation. There is nothing “pseudo” or “benign” about this illness or the pain and disability that it can cause.
3. Be an advocate.
There may be times when you literally find yourself acting as an advocate for your relative or friend, who may be too sick be his or her own advocate. If you are a caregiver, you may be the person who helps relay your relative/friend’s medical experiences to a physician. It’s helpful to document that information, in a journal or daily record.
Educating yourself—and other people— about chronic IH is also important. Don’t be afraid to ask questions of physicians or seek out others if you feel your questions have not been answered satisfactorily.
4. Know when to give advice.
It’s normal to want to help others who are suffering or in pain, especially when it’s your daughter or your best friend. But sensitivity is important. A chronic IH headache is still very mysterious. We do not know what causes it, though lowering intracranial pressure often brings relief.
There is still a lot to learn about this disorder and its effects on the brain and body. Keep in mind that an IH headache does not usually respond to traditional headache remedies and pain medications. For some people with idiopathic IH, weight loss does not always make their symptoms better. When in doubt, first ask questions about your friend or relative’s experience. Then you can gauge whether to offer advice.
5. Today is today.
Chronic IH is unpredictable, which means that there will be good days and bad ones for the person who is ill. It’s hard to know what your friend or family member will feel like or what tasks he or she will be capable of tomorrow, which is why it’s best to concentrate on the present. Be patient because abilities can change quickly; it’s not intentional but the nature of this illness. At the same time, never give up hope that the future can bring long-awaited answers and better treatments for your loved one.