Shortly after becoming ill, in June of 2016, I started a support group for people who have intracranial hypertension and their loved ones called IIH Warriors. This group gives people who have IIH or are a caregiver of someone with IIH a place to commiserate in their pain and difficult experiences, share helpful tips, vent, etc. Over the last two years that group has grown to include 1850 people and counting from all over the world.
As the group leader of IIH Warriors and a member of several other support groups for various chronic illnesses, I have learned that there is a common set of frustrations within the chronic illness community:
•You may be talking with someone and that loved one will unintentionally be dismissive in some way.
For example, they may say something along the lines of “it could always be worse.” or “at least it’s not cancer.” For a lot of reasons, this can feel dismissive and diminishing of the pain and difficult experiences you have had to endure, and while someone else almost always has it worse, it is important we don’t invalidate someone else’s pain.
That being said, I think that it’s important that we also remember that we aren’t conquering these experiences alone… These experiences are scary for our loved ones as well… and sometimes minimizing it can simply be a coping mechanism, not an intentional jab though it may feel that way in the moment.
It is also entirely possible that they are not trying to minimize what you’ve conquered, but that they are instead trying to be positive and uplifting so that you don’t feel so down and depressed. They may feel the need to be the cheerleader of your group. This may be another form of coping.
•You may also find that you will be talking and the loved one will offer suggestions.
For example, they may say something along the lines of “have you tried a vegan diet?” or “have you tried yoga?” This can be really frustrating for a lot of reasons… but mostly because it gives the impression that the chronically ill person hasn’t already put in their best effort to get better. It gives the impression that they wouldn’t stand on their head, stick their finger up their nose and record themselves singing the ABC’s backwards if that would cure them…
Like I said before, I think that it’s important that we as chronically ill people again remember that our loved ones are trying to cope with this as well…Sometimes that means offering advice because they can’t just sit back and do nothing and feel helpless while you continue to not get better… while you continue to be in excruciating pain. Maybe you are even continuing to deteriorate. That is difficult for anyone to witness, let alone someone who loves you.
•A chronically ill person is trying to make a connection with a loved one and gets no response.
For example, a chronically ill person may be telling a loved one about a particularly difficult doctors appointment or a symptom flare and an awkward silence may follow. Or some with chronic illness find that some loved ones don’t respond when their illness(es) get brought up. This is disheartening, frustrating, and confusing for a lot of obvious reasons.
Once again, I think it’s important that we remember that our loved once are trying to cope with this scary journey as well and some of them would much rather not say anything at all than risk saying something and coming off as offensive, silly, ignorant, etc. So they will serve as a listening ear or a shoulder to cry on, but they don’t say much in response because they don’t want to say the wrong thing.
These situations are not any one person’s fault. Unfortunately chronic illness causes a wide variety of symptoms that can lead to irritability and when you mix irritability and misunderstanding, you are going to get a tumultuous situation. In these situations I think it’s important that both parties grant each other some grace and understand that neither one has it particularly easy… Being sick is hard and watching the one you love suffer is hard.