NOTE: Personally, I prefer the term “condition” to “illness” as it helps me feel less “ill”. For the purpose of this piece, I’ll use both as for many people they feel more in alignment with “illness”. For the purpose of awareness, please note, these include physical and mental health conditions.
Being in a relationship with someone with a chronic condition, or multiple conditions, is challenging. Maybe you knew before you became attached to them, or perhaps the condition(s) developed or grew more noticable during your relationship. Either way…it can overwhelming at times. You may be asked to do things you weren’t expecting, you may be stressed in ways you can’t anticipate. And being a person with a chronic condition(s) who is in a relationship carries with it lots of guilt, self-recriminations and wishing you were different. Often, we are mourning who we used to be, and coming to terms with the current version of our abilities. I’ve been both the person who is living with and loving a person with a chronic condition, and the person struggling with the limitations of a chronic condition.
The most important thing for both people in this connection to realize is that society’s “norms” simply do not apply. The measures of success commonly held by “healthier” people are not applicable to those whose illness or condition keeps them from attaining the prescribed goals we associate with success. Success might be as simple as getting out of bed. Or it may not include getting out of bed at all, but listening to one’s body to see what it needs.
People who are challenged with chronic conditions also are just as loveable, and just as loving. In many cases, because of their condition(s), they engage with life in a way that reminds us to be more present, more grateful, more in tune with what really matters. There are no guarantees. Even for the so-called “well”. Wellness can change in a second. For anyone. Loving someone who is struggling with something that isn’t going to go away, and may (or will) get worse, might even provide a healthy dose of perspective.
The following list is compiled from my own experiences, and from those around me who are dealing with chronic conditions in their lives or in the life of their loved one. Many of these apply to both people, and I’ve specified where it’s more about one than the other. I hope they prove helpful to you if you’re navigating the world of chronic illness with someone you care about.
1. Hold a safe space for the down days and don’t override the expression with toxic positivity. Saying “you’ve got this” or “you’ll be fine” can feel dismissive to someone who is having a hard time. Doing it to yourself can also prevent the proper processing of your negative feelings. It may be helpful to have a safe word or signal that you can share that says “I am not able to receive encouragement right now”. Make sure to give some time to allowing all of your emotions to move through you. Shutting them down can lead to increased symptoms, fatigue and depression.
2. Honour limitations and plan accordingly. Whenever you’re thinking about an activity, it’s important to be flexible, adaptable and to recognize what limitations are in play. Discuss it together. Figuring out how to do something safely and mindfully is the first step to making it possible.
3. Celebrate small successes. Whenever something is accomplished, revel in the feeling, enjoy and share that moment together.
4. Hear what those with the condition(s) know about themselves, their bodies, their illness(es), their prognosis and accept that. Also do the research yourself so you understand what they’re saying – if you’re the partner who doesn’t have the condition. Attend appointments together if that is something your partner requests and make sure to get clarity on what your role is; are you there to support or are you able to ask questions?
5. As the healthier partner, support but don’t push…unless you’ve been specifically asked by them to help provide accountability or motivation. Then push gently. Use outside systems like setting alarms for duration of exercises so it’s not “you” telling them to keep going, it’s the clock. As the person with the condition, set up your own systems and share them with your partner so they see what it is that works for you.
1. Have hobbies and friends apart from your partner.
2. Give yourself space at least once a week. Both of you need “me” time.
3. Tend to what’s necessary in your life. As a person will an illness, taking charge of what you can is important to maintaining autonomy and independence as much as possible. As the healthier partner, it is vital you don’t drop your entire life to focus on your partner’s needs. This will just lead to resentment.
4. Ask for help when you need it.
5. Let your partner know if you’re struggling, are confused, feel emotional, feel down or conversely, are feeling great, content, fulfilled, excited. This also helps us ALL feel okay with the emotional rollercoaster we’re riding.
6. As the healthier partner, find joy in outside activities and share that joy with your partner if they aren’t able to participate. In this day and age we can share pics, texts and videos at a moment’s notice.
7. Don’t neglect your own mental and physical health. As the healthier partner, you can’t help someone else if you’re a mess. And as the less-healthy partner, you can certain focus on getting as much of what you need to feel better emotionally and physically. Keep track of what helps and keep doing that.
8. Tend to your financial needs. Research ahead of time for supports to access when the time comes. Discuss any wants, needs, fears and desires.
1. Build memories with family and friends. Take the time to connect with them regularly.
2. Talk about things other than the condition.
3. Check in about how often you should be checking in with one another. One of you may not mind a daily “How are you feeling today?” but the other may receive it a constant reminder that they should be feeling “better” or “fine”. Get clarity about how much and what kind of checking in works best. In our house, “How did you sleep?” is a great question, unrelated to the conditions we both have, but very important information as it often impacts symptoms.
4. Small things matter. Enjoy the simple things. Do what works for you as a couple to find connection, beauty, relaxation, routine, rituals, and provide sensory stimulation as appropriate.
5. As someone with a chronic condition, let your partner know what you are feeling like any given day so they don’t have to ask or make incorrect assumptions – especially when something is different than before. Same goes for the healthy partner – guessing that they are feeling fine all the time because they don’t have a chronic condition is just as harmful as assuming every day is bad day just because you have a chronic illness.
6. When conflict arises, communicate when you can do so with a clear head. Take breaks if needed. If a partner asks to table something until later respect their need to disengage. It’s okay to go to bed mad if you can’t be rational because you’re overtired or overwhelmed. Seek out your partner’s perspective. Use kindness and respect when speaking about emotionally charged topics. Be vulnerable.
7. Talk about intimacy. What does it look like? What feels good? What feels like too much? Don’t assume that the partner with a chronic condition isn’t interested in expression themselves sexually. And as a person with a chronic condition, don’t assume that it’s up to your partner to initiate or express desire to be intimate with you.
1. Express your own frustrations to another safe person (a professional therapist with experience in chronic conditions is best) then let your partner know if you’re overwhelmed and need a break. Be clear with yourself and your partner about what you can and cannot do.
2. Be grounded in the reality of the condition. Normalize it.
3. Argue with your partner like a normal human. It helps us feel normal. If you would normally complain about them not putting their dishes into the dishwasher, stopping that only makes sense if they are no longer able to do so.Note:Big fights may be overwhelming and too taxing, so make sure you learn how to manage and moderate your emotional reactions (good to do anyway). If it happens, own your part as soon as possible and help plan for some down time for your partner to recover.
4. Use humour. You know what your partner finds funny. Have fun to lighten up the situation. If it doesn’t land well, apologize immediately. They just weren’t seeing the humour and that’s ok. Don’t give up entirely. Try again on a stronger day.
5. Date your partner. Even if it’s a picnic inside on the bed, or a walk around the block. Do what they can do with them. As someone with a chronic condition help make appropriate contingency plans and communicate clearly and immediately if something changes; in other words don’t push through in order not to “ruin” the date.
If you would like my help navigating the world of living with or loving someone with a chronic condition, please feel free to reach out through my Contact page.