Relationships + Chronic Illness
Relationships are hard.
Whenever two (or more) people actively choose to come together and support each other through this thing called life, things are gonna be difficult at times (and also super rewarding). That is the beauty of human connection.
Butttttt, then you add in a chronic illness, and well shit, things just got more complicated.
Here’s the thing tho…we ALL bring things to a relationship - illnesses, kids, humor, debt, family drama, smiles, love, etc etc etc.
Everyone brings something, even if they would prefer not to. The key is finding someone who is committed to being a team and who is willing to grow and evolve with you.
You are more than your illness and the right person will not make you feel ashamed or guilty for being sick.*
*Let me interject one thing right here…IN NO WAY DO YOU WANT SOMEONE IN YOUR LIFE THAT IS NOT SUPPORTIVE. Sure, Aunt Karen you see once a year is fine. But a partner in daily life? NO.
Ok so, relationships are hard. Relationships with a chronic illness are gonna be a bit more hard.
Howeverrrr, we are used to things, like relationships specifically, being harder with an illnesss AND we know there is a way to find balance and joy still.
Below are tips for doing just that…
TIPS GALORE
Some background first - I’ve had MS for 19+ years (aka half my life). I started dating my now husband 6 months after I was diagnosed. I chose to disclose MS immediately. We have lived through multiple degrees, building a house, sick parents, and literally any other stress a ‘typical’ Millennial has existed through (so like all of it, aside from having children, but FWIW we have an 18 yr old needy cat that is spoiled rotten). There have been happy years, hard years and everything in between. Through it all I/we have learned some serious lessons.
Without further ado and in no particular order…
You are a team
You have to be (and stay) a team. Your love for each other started for a reason, what was it? What do you truly value in your partner? Remember that when emotions runeth over. Above all, treat each other with respect. You are with each other not against each other. Always.
This is extremely simplified, but chronic illness or not, problems will come and go in relationships. At the end of the day, you each have to consciously decide if y’all are going to go at life together or not.
While it is obviously not as simple as ‘oh we are committed so we will stay together’, commitment from each person is mandatory to even have a chance. From that strong foundation, you can go very far together.
Communication Matters
We all know communication is important so I am not gonna go into that. What I will share are the specific insights that I have found pertinent to chronically ill-relationship-life:
Communicate your needs, feelings, limitations, etc openly, honestly and with respect by using ‘I’ statements to describe your experience.
Disagreements occur. First, regulate your own emotions and body. Then, when your partner is ready, talk about it calmly. Use disagreements as a time to share + come together over the emotions instead of letting feelings of frustration, resentment or guilt pull you apart. This does require patience, being regulated yourself and setting your ego (and your defense) down. But, once you get past that, it is simple to actively listen to understand NOT to respond.
Acknowledge and/or validate what the person says before responding or reacting to it. Think about it, if you share something important, how good would it feel for your partner to repeat and confirm what they heard before responding?
Get a phrase. One thing my partner and I have is a statement to say when things get heated - ‘I am on your team’. This speaks to us and reminds us that we are on the same side.
Meet weekly. Glamorous? No. Game changer? Yes. Use that time to reflect on the past week (What went well? Where could we make edits?), reflect on how we each feel (mentally, physically, emotionally, with each other) and go through our schedule for that week. This gets us on the same page and sets a nice underlying tone of teamwork. And it prevents relationship issues from growing out of control.
Make it a habit to address strain before it explodes. We do our best to always prioritize our love for each other and talk about things before it gets out of hand. No one is perfect, but we are doing our best. Finances, social life, housework, are just some of the things that become more complicated with chronic illness. That is not to say it is not manageable, it is. However, it requires trial and error, team work and creative solutions.
Little things are big things
When you are in a relationship especially one that is years upon years long, little things become big things. So take advantage of it - do little things consistently to remind your partner that you are on the same team. It doesn’t have to be a big thing - leave a little note, send them a selfie when they are away, buy their favorite snack, put down electronics when together, acknowledge them and thank them.
The same things that make relationships flourish and last in ‘normal’ relationships works for chronically ill relationships after all. Be thoughtful, make them laugh, show ways you care. It will go a long way.
The grieving process
Illness affects each of you differently and both are 100% valid.
The person with the illness may be in a whole different part of the grieving process compared to the person without the illness. It is crucial to come together, hold space for each other and communicate authentically and vulnerably how you are each feeling. Do not take it out on each other. See it as an opportunity to build intimacy and further strengthen your relationship instead.
Don’t forget about yourself
Each of you must prioritize your own self care because you can’t show up for each other if you don’t show up for yourself first.
Alsoooo it is okay if your self-care needs are different than your partner’s. Your goal is not to be the same person, it is to support each other in becoming their best self.
Maybe your partner is an extrovert and needs more social time, but you want to stay in. That’s cool - you don’t and literally can’t be everything to each other, but you can support your partner in living out their extroverted dreams!
Discuss your needs openly
We are all adults and have needs. If you have a chronic illness, you probably have some specific ones for that illness. When you feel the time is right, educate your partner on your condition, symptoms and how they impact your life. Remember, chronic illness doesn’t take away our choices, it just changes the choices you have. At times, it may require y’all to get creative and adapt. Y’all can use that as team building time or have it be a wedge in your relationship - the choice is yours.
BTW if you’re the partner without an illness, you likely still have non-negotiables that come up too…share ‘em because YOUR NEEDS MATTER too. One person does not have it worse than the other - it is just different. You all agreed to come together as a team and tackle life together. You can’t do that if you set your needs aside.
Personal time - TBH My partner isn’t one to share his needs and while his intentions are good (to minimize my stress), it actually pisses me off in more ways than one. First, I literally always have a need + for him barely to have any makes me feel burdensome (even though he doesn’t intend to make me feel that way). When he does share, I find that it’s actually validating to know that he has needs and needs help too. Second, I want to help. It turns out I like my partner (surprise!) and I like helping him. By him vocalizing his needs it gives me the opportunity to show him that I care. And, it allows him to feel cared for! Third, suppressing needs just builds resentment that comes out in other ways. No one is a mind reader so sharing prevents future issues. Win - Win - Win
So like I said before, both of y’all need to share your needs with each other (and obviously do it without shaming, blaming or putting the other person down).
Accept + Adapt vs Dwell
The only constant in life is change. Literally everything changes. Our job as humans on this planet, is to acknowledge our reality (even if we don’t like it), accept it, focus on what we can control and adapt so we can live. This holds true in relationships too. Each person’s capacity and ability will change. When this happens, come together as a team and figure out each person’s strengths and weaknesses and use that knowledge to your advantage.
For example, for weekly meals I used to plan, shop and cook everything. But now, that is too much. Since I am organized and like to cook, I own the planning and the cooking part. My partner handles the shopping and helps with cooking as needed. That way it can all still get done in a way that works for us, even if it is different than the past.
Explore different types of intimacy
This is a place for you to explore ways to have fun with your partner. Sex is great AND there is more to intimacy - hold hands, create a safe space, have fun, let loose. Whatever it is, plan intentional time together. Honeymoon phases end and life will get in the way.
Don’t let it.
Plan play dates, pleasure time, goofy time, all the things. Make forts (yes seriously), do puzzles, listen to music, dance, sit in the sunshine and dream together, do it all (as long as it makes you both happy).
Set realistic expectations
Your partner is not meant to fill every single need you have. Make sure to build a life outside of your relationship. Find community outside of them. This can be harder if you are chronically ill, but it is so so so necessary to each have your own interests, passions, friends and life.
Seek support together
Bonus points if you do it before you need to do it. :)
Finding other couples going through similar experiences can be life changing. This can be especially true for the person that is NOT chronically ill, since they are not as likely to be plugged into virtual chronic illness communities.
Couples therapy can also be an option because it provides dedicated time for you and your partner to discuss your relationship together in a safe setting.*
*On this note, relationships do indeed take two people. Both parties need to be willing to partake in therapy. If your partner isn’t on board with your chronic illness or seeking support for the relationship, it may actually be a blessing in disguise. I hate using that term, but letting go of people that are NOT on board is *actually* saving you a shit load of trauma and hell so be sad about it not working out, but move on. Eventually you will see you dodged a bullet (sorry, but no support is better than negative support)..
Respect boundaries
It is critical to chat with your partner around your own personal boundaries regarding communication, needs, etc. Make sure to revisit this conversation to make sure y’all are still aligned too.
That said, the boundaries conversation extends further when one (or both) of you are chronically ill. Other things you may want to touch base on include: what personal care tasks your partner will or will not do, if they should attend doctor appointments and what their role is in your medical care etc. just so you are all on the same page.
Check in with your partner
Hopefully this is kind of obvious, but you don’t know how your partner really is without asking. We aren’t mind readers here.
If you are the chronically ill one, you can ask your partner how they are doing (I know, novel concept right?). They may not be the best at saying how they feel out of the blue, but prompting them can help them tune into how they are feeling and shows that you care. Encouraging them to take time for themselves is important too.
Caregiver burnout is very real and checking in can make a world of difference. And, just to be clear, when I say caregiver - I mean in ANY way. If you are in a relationship you are your partner’s support person, meaning you are a caregiver whether or not the person is chronically ill IMO.
Anyway, knowing the signs for caregiver burnout is important. They include: withdrawing from friends/family, getting sick more often, being more irritable or sad, wanting to hurt yourself or the person you are caring for, experiencing changes in sleep and/or emotional or physical exhaustion. If that is the case, encourage your partner to get help.
Your words matter
Language, language, language - You undoubtedly spend a lot of time with your partner. The language you use and what you all talk about can make or break your relationship.
Here are just two examples:
Complaining - sure complaining is part of life, doing it endlessly is less so. Do you really need the worst of everything to be brought to your attention? A complaint is like a paper cut and being around complainers all day is like death by a thousand paper cuts. It can totally skew your perspective of yourself, your partner, your health and the world. So watch it!
Humor - Let’s face it chronic illness life sucks sometimes. Laughter can make it suck less, so use humor to your advantage. Personally, I love some dark humor. Regardless of what you enjoy, find ways to infuse humor (and fun) into your language and day to day life together.
Story time - lately I have been feeling like a pessimistic Patty, way more than normal and to the point it is dampening my mood. I started listening to podcasts with comedians during the day to lighten my world and it definitely helped. Plus it ensured I was in a fun and more playful, joking mood when my partner and I interacted. I am not saying to go listen to podcasts, but find something that is gonna brighten your day and put a smile on your face and do more of it.
Don’t compare to others or the past
Do NOT compare what you see on social media (or even in real life) to your relationship. You have no idea what happens behind closed doors. That is comparing apples to oranges. They aren’t the same and never will be.
Instead ask yourself this: Does your relationship work for you? Align with what you want for your life? What you want in a partner? Are you happy?
Do NOT compare the past to the present. Reminiscing happily is fine, but doing it in a way that gets you both caught up in grief and taking it out on each other that things are not the same is not. Accept that the past is the past, the future hasn’t happened and the present moment is all we have.
Want the future to look different?
Cool, do something different in the present moment. :)
Did I leave anything out?
Relationships are hard and take conscious effort and work. They all differ too, what works for some, may not work for others and vice versa. There are so many nuances and experiences in relationships I feel like even after this big ass list I undoubtedly left some tips out.
So, if you have any thing you learned from being in a relationship (friendship, romantic relationship, etc) as a chronically ill person share it below! And, caregivers, too, please share your insights!
The more we can all learn and grow together 🧡
