Chronic Illness and Relationships: It’s About Communication
My partner and I struggled a lot when my health went from bad to incapacitating. It was hard for us to wrap our head’s around how to manage this superstorm of vertigo and migraine and keep our lives going. One thing that I will never forget, is that one of the biggest sources of stress for him was that he felt helpless. My auras made it difficult for me to communicate and I was very emotionally shutdown. So not only was he alone in dealing with my illness, there was nothing he could do. At the same time I was a different person who was confusing to interact with, and needed a lot of additional support. These are some of the lessons we learned in maintaining a healthy relationship while dealing with the unwanted third partner of chronic illness.
Our loved ones can’t read our minds even when we’re healthy. When we’re sick we are experiencing a completely different reality that they don’t know. While you know you look out of it because you have a migraine and you’re straining to not wince every time they speak, your partner does not know that.
Once I started communicating my symptoms things got a lot easier for us. If I’m having vertigo and I am slumped over the arm of the couch with my eyes closed it goes a long way for me to say, “I am having a vertigo episode, I need to be like X, but I am listening to everything you’re saying.” Goes a LONG way.
With chronic pain conditions we also tend to be very disengaged physically, and I talk about that. We also communicate with ways we can have physical contact when I am super sick. Narrate your symptoms to your partner, let them in to what is going on with you. This turns chronic illness and relationships from people going through it as islands, to two people going through it joined together.
Let Them Know What They Can Do
Helping someone with chronic illness is often counter intuitive, and people who care about each other don’t like to see one another in pain. We often need very specific things. We can also go into crisis and not be able to clearly communicate, which is extremely stressful for partners. They see something horrible happening, don’t know what it is, and feel helpless.
Have a Plan for Episodes
When I have vertigo and/or bad aura my ability to speak is greatly impaired. Step one is I voice “aura”, “vertigo”, “attack”, “my ear” or something like that and immediately he knows what is going on with me, since I have already explained it.
He knows I need to take medication, he checks to make sure the water bottle is full. He knows to ask if I need help with getting my medication. He knows that my answers will be incomplete, but since we’ve talked about it the words I can get out make sense.
When we are out he knows if I bump his arm I need to interlock arms because my balance is bad. He knows why I need to walk outside, or find a quiet place for a few minutes, and how to cover for me with family/friends. He knows when we’re out shopping if I said 5 minutes before that I think I might be getting a Meniere’s attack and I dash out saying “I need to take my medication” why I am saying that, and that I likely will not be coming back.
All these little things clear up so much confusion and stress, and neither of us feel helpless. He also doesn’t feel like he’s doing the wrong thing, and I get the support I need.
Be Clear About What You Can and Can’t Do Around the House
Some of the simplistic chores are next to impossible for me now. There are a lot of days where if I attempted to do dishes I’d likely break them all. There are certain ways that spaces need to be organized so that I can do things like cook. Carrying things up and down the stairs is also often a disaster, and actually can be dangerous with my balance issues. Stuff that requires a lot of bending is just off limits. Grocery shopping is also very hard for me to do on my own.
However, when he helps get the details in order I can do the broad strokes and get our house in excellent condition. He brings the grocery bags into the house, and I organize all the cans in the pantry. He care of getting laundry up and down the stairs, I put it all away. By being clear about the details of what I can and can’t do, I am actually able to do more.
Remember It’s Not Just About You
Psychologically, and I mean at the brain level, chronic illness makes us selfish. Emotionally we are automatically predisposed to be focused on pain. We are also very focused on self preservation. So we have a tendency to want to go into a dark corner and hide. These are the biological hard wired responses we have to pain. However, in chronic illness they actually in the end make things worse since we are hiding to heal from something we are not going to recovery from.
When we hide our loved ones feel it, and the reality is that a lot of the time engaging with them is going to help us too. We can use our loved ones to keep the beat of where we want to be, and at the same time be reciprocating the relationship. It is possible to modify together time so that it works with the illness, and not against it.
Like right now since my right ear is a mess sitting on the couch next to the air conditioner is nightmarish. However, the simple change of where I am sitting allows for us to be together in the same room. I try to do whatever I can to modify the environment so I modify our relationship as little a possible.
Give Your Partner What They Need
This is something I often need to put conscious effort into since when I am sick my needs and his needs are very different. I have to let him know I can’t read his mind, and that he needs to tell me what he needs. It is my job however to be responsive to that. If he asks I do my best to follow through. If my ability to cuddle, make a phone call, whatever it may be we talk it out and I still do SOMETHING.
Pick Up the Slack When You Can
On my good days I try to get done everything I possibly can done in the house. I remember as I am doing it all the times where he has had to do the same because I was ill. I keep in perspective that I am contributing to my fair share, it’s just with my illness who is doing how much varies day by day. The past few months I’ve had a lot of good days and I’ve kept the house in great shape. It’s a small token of appreciation and pulling my weight compared to the number of doctor’s appointments, hospital visits, dealing with the day to day nitty gritty of having a partner who can barely stand on her own for months at a time. When I keep that in mind I’m excited and proud when I manage to take led in keeping the house clean, food made, etc whenever I possibly can.
What it really all comes down to is staying engaged. I can’t always be bright and happy, and when I am not I try to be clear about why. Sometimes by the time he gets home I can look checked out when I’m really not. I try to be mindful of that and let him know where I’m at. If he points it out to me I try not to be offended or defensive, instead I am clear about what is going on.
So often what our loved ones need to here is why we are acting a certain way. Being clear and genuine in explaining can go a long way in maintaining a healthy relationship. Through working on this since I’ve been ill we’ve actually had far fewer arguments, misunderstandings, and overall understand and appreciate each other more. However, since I am the one who is sick and it is my conditions that often create barriers the primary responsibility for overcoming those in our relationship is on me.
Be Willing to Apologize
None of us can be perfect all the time, we all screw up in one way or another. It is important to be willing to recognize when we’ve done wrong and be willing to apologize. It is important to be willing to do so even when we weren’t intending to be hurtful. When I am really struggling I can appear very detached and disinterested, and at times am easily distracted. Even though I am not intending to hurt my partner, my behavior is still hurtful.
It’s so important when loved ones point out how something we have done hurts that we consider it carefully and not become defensive, and be willing to apologize. It is also important to build up self awareness of how our behaviors even when they are not intentional or even controllable. Leading the evening saying “I’m sorry I am really off tonight, but know that I care,” helps maintain healthy connection with our loved ones.
Thank one another for everything. Any chore he does, I try to remember to thank him. Every favor, every trip to the store, we don’t let anything we do that benefits one another sit as a given.
However, the most important thing I try to show my gratitude for is the time’s he gets me and puts up with me being in rough shape. When he’s ok with me being, pardon my language, sick as shit. When he’s supportive without even thinking about it and with zero effort. When he goes out of his way to ask me what I need even though I’m just a little dizzy, shaky, etc. Considering he is like that most of the time, I’m saying Thank You all the time, and I wouldn’t have it any other way.
Gratitude is also about showing acknowledgement of the other person, and what they are doing that is meaningful and helpful. Gratitude also brings everything that is working well in a relationship into our conscious awareness and pushes those things into the foreground of how we feel about one another.
And even on the worst of days when we can do nothing else we can still say Thank You, and it is the biggest thing we can do, even when we are thankful for the littlest of things.