To Those Wondering Why They Should Bother Inviting Their Chronically Ill Friend Out
Question: Do you have a friend/relative who has a medical condition and you are sick to death of inviting them out, because they never go?
Do you often call them and get the answering machine?
Do you often become frustrated and wonder why you still bother?
Here is some food for thought…
Whenever I do anything now, I have to consider the consequences:
Do I have the energy?
Can I agree to something so far in advance?
These are the questions we have to ask ourselves every day, with virtually every activity even conversations!
The duration and severity of symptoms associated with symptoms differ with each individual, so it is often difficult to know what someone needs every day, so no one can write us a how-to book. Some days we can even wake up and simply by getting dressed there is nothing left for the rest of the day, so we have to rest to gain energy regardless of if we just woke up. Whatever we have planned is then cancelled. Many agree that we can battle through pain thresholds, but cannot battle through exhaustion. It is a wall you cannot pass until you rest. For many, simply the anxiety of panic can come over them like a wave and crush any enjoyment associated with even the simplest of plans.
Having a debilitating illness affects you physically (obviously), but that’s not all. It impacts emotional well-being, too. People often find that they lose their friends and social life simply because they’re alienated all the time. Friends no longer invite them places since they always cancel, they lose contact with the colleagues they once had through work and no longer participate in activities they enjoy. They often have feelings of guilt and isolation. Not only are they faced with a debilitating illness they never asked for, they now also lose contact with the outside world as a result. The emotional frustration and pain can lead to depression or exacerbate the already existing depression.
Most of the time, due to mental overload and the cognitive difficulties, conversations are such hard work. The simple act of chatting can use up so much energy trying to work out words in a sequence, I now avoid them with certain people. People who are around me all the time understand me and the conversations can flow, but even then I often get lost mid-sentence and forget what we are talking about. With my gang (sons, parents, sister and her gang), I am not embarrassed or self-conscious.
I cannot do conversation when I am tired. I cannot do people who seem to have an agenda of “pull yourself together.” They physically drain me and turn my head into a marshmallow.
This is not limited to physical tasks — mental tasks drain the life out of you sometimes.
The cognitive symptoms can be more troubling to the patient than other symptoms.
The hardest part is you ache to be the old you and chat for hours, but you can no longer tolerate it so you crave it even more. Like when I have a run of migraines I cannot drink coffee, yet coffee is all I crave!
When the exterior looks healthy yet within it there is turmoil, it can have a profound toll on our daily life and likely impact our emotional health. Rather than simply dismissing us as a waste of time, just be patient and try and understand.
Many people hide the way they feel and can seem nonchalant to the needs of others. It is not that they mean to let other people down continuously; they simply cannot help the way they are. Often when they try and explain, they are silenced or not believed as many people do not conform to the stereotypical version of what a person with an illness or social anxieties “should” look like or act like.
Maturity and mental clarity now allows me the freedom to out myself and tell people I have certain medical conditions. As soon as I mention I have panic attacks, the usual response is to be told I don’t! I am apparently too outgoing, too bubbly, too confident. People are experts at my mind.
Why not ask your loved one what is the best way to communicate now?
They may prefer a simple text: “How are you today?”
I used to chat on the phone for hours to my mom. Now I text her more. It is easier for me. We still talk on the phone daily and she knows I still love her, but we don’t talk for long as I get lost in the conversation. She spends a full day with me on Mondays, when we have dinner together, collect the boys from school and have tea.
Please don’t stop inviting.
Even if you know your friend always cancels party invites, never remove them from the list. It is so cruel to stop asking people simply because an illness they have makes them too weak or afraid to join in. By inviting them, you have made them smile. Write a little note inside saying you understand they are unwell and often too ill to attend, but keep hold of the invite as it may be a good day and even just come for an hour because it would be great to see them.
Friendships often change over the years. Some of my closest friends are people I met at school. If our communication levels remained the same I would still be passing notes to each other, meeting in the canteen to eat my dinner every dinnertime, the bike sheds every break and waiting until my Nan was out to use the phone or being allowed one minute to talk.
Friendships with an illness have to change super fast, so hang in there and embrace the change.
I hope if you have a friend or relative like me, and you often become frustrated and wonder why you still bother, you now think a little differently.
Love and gentle hugs.