Happy Valentine’s Day! It’s time for real talk about the ways that people with arthritis deal with relationships, love and intimacy as they manage their disease.
On Tuesday, Feb 11, The Arthritis Foundation’s Rebecca Gillet (co-host of the Live Yes! With Arthritis podcast) hosted a Facebook Live! event with Meg Maley, a reality TV star from CBS’s Big Brother; actor Clark Middleton, who has a recurring role on NBC’s The Blacklist; Mariah Leach, the founder of Mamas Facing Forward; and Jed Finley, the founder of Living with Ankylosing Spondylitis. They had a frank discussion about their experiences related to love, sex, and relationships.
You can watch the entire inspirational Facebook Live event by clicking here. Here are the key takeaways:
Question #1 – Dating can be difficult under the best circumstances; how does arthritis change the dating dynamic?
You have to be confident in yourself. Swollen joints or patches of psoriasis can make you feel embarrassed, but it’s better to be upfront and open with your loved one. Don’t be afraid to explain your arthritis to your significant other, because it’s better to be your true self — and that includes how arthritis affects you. Honestly, the more you hide it, the more pronounced it will look to other people. When you wear it as part of who you are, it kind of goes away—people don’t pay a ton of attention to it. It doesn’t have to be an obstacle; you can treat it as an asset. Share your diagnosis and be willing to answer any questions they have.
Question #2 – When and how do you tell someone you’re dating that you have arthritis?
It’s a big part of your life, so make sure you’re comfortable sharing this with other people. It’s worth it to share this part of your life with them because it’s much easier. People are quick to see past it if you own it.
Question #3 – What mistakes have you made in relationships relative to your arthritis?
Believing in “mind over matter”. In reality, this just forces you to do too much and exacerbate issues by trying to over-correct and make up for, or cover up, your arthritis pain. The need to “show your worth” or “show your value” in a relationship can be harmful to your physical health. On the flipside, you can also lack compassion for your partner if they’re sick or in pain. It’s easy to feel like other people shouldn’t complain when you’re dealing with much worse than them on a daily basis.
Question #4 – Has arthritis revealed anything unexpected in your relationships?
You could discover that your partner is the best medical partner ever — someone who can easily remember important information and act as a sounding board. It’s great to have someone who isn’t squeamish with the tasks you might have to do regularly — like doing an injection to deal with pain.
Your diagnosis might help you prepare to be parents, like how to deal with things you have zero control over. Talking about when things are terrible and you’re exhausted. Building teamwork by going through the typical hurdles first-time parents go through.
Question #5 – Arthritis doesn’t always keep your timetable; how do you deal with unexpected flares?
You have to manage your time well and accept your limitations. Then make sure both you and your partner understand those limitations. Don’t feel bad about not being able to do everything. Remember you don’t always have to do everything together. Adjust your schedule so you know the downtime you need after doing activities, if you already work it into your plans, it won’t seem out of place.
Remember when you’re traveling that you don’t have to see everything; you can find one amazing place and hang out there. Don’t feel like you have to keep up with your partner.
Tip: Say “thank you” statements instead of “I’m sorry…”
— i.e., “Thank you for understanding” instead of “I’m sorry I can’t do this.”
Question #6 – What is the best advice you could give or have received about dealing with arthritis in a relationship?
• Own your own role in having arthritis as a piece of yourself.
• If your partner thinks of arthritis as something you face together, it can relieve the guilt you can feel about the stress and challenges arthritis places on your relationship. Having a united front can bring you closer together.
• If you consider arthritis your issue you have to deal with physically, it can be a lot to bear. But if it’s something you’re both willing to work on together, and laugh and be creative about, then it becomes something doable you can face together.
• Freedom is in the minutiae. You don’t have to do everything; the freedom is in the tiniest things. Find the great things you can do in the small area of what you can do rather than focusing solely on your limitations. If you try to operate outside of your limitations to please someone, it’s not going to be a good experience for you.
Question #7 – How do you deal with intimacy in relationships with arthritis?
There’s always the fear of not knowing if you’ll be able to get into this, if you’ll be hurting after or if it will affect the plans you have in the near future. Arthritis can make a lot unknown regarding your physical health, making it difficult to “get in the mood” and stay there.
Treat intimacy as an opportunity to get creative and explore different options like assistive devices, fun toys, propping up with pillows, etc. Improvise and have a sense of humor about it.
Take your pain meds in advanced or take a warm shower so you feel more relaxed and less in pain.
It’s important to accept yourself and feel comfortable in your body despite weight gain from medication, rough skin from psoriasis or swollen joints. Your self-esteem contributes to your intimacy. The challenge with any disease is your sexuality can feel connected to your humanity, so embracing however we find ourselves sexy can feel powerful.
You have a right to sexual health. If you’re really struggling with your libido, talk to your doctor about it. Your medications can affect your health, or there could be other factors in play that could be detrimental to your sexual health.
Question #8 – How do you respond to invitations ahead of time?
Don’t plan your life thinking you won’t feel good. Don’t be afraid to say yes, but also don’t overcommit yourself. If it’s something you want to go it, commit to it and plan for it. If it’s an activity you believe you might struggle with (like walking around for a long time) suggest an alternate or similar activity. If you accept and then have to decline, practice the “Thank you for….” statements instead of apologizing.
You don’t have to be your 100% self to go and do something. Your family and friends will accept you if you’re not at your best; they just love your presence. Make sure to take breaks during social functions when you need to, if possible.
Question #9 – Anything else? Any final advice?
Communication is key, so don’t hide anything. Being open and honest at all times is always best. Be willing to laugh at the situation, with a partner who will laugh with you.
Language matters. Being upfront is important, but the language you choose creates a better life and makes you feel better. The way we frame our thoughts and language controls our inner dialogue and how we see ourselves. Instead of “struggling” with arthritis, see arthritis as something that challenges you. Be aware of the language you use when talking about your disease, to frame your own mindset.
There’s someone out there who will be willing to support you, go to doctor’s appointments with you and fight this disease with you. Love is out there and having arthritis won’t prevent you from finding the right person.
Libido issues, or discrepancies in division of labor at home, can be difficult conversations to have with a longtime partner. But it’s important to know you don’t have to find the solution to tough problems in one conversation. Keep having the conversations. Strong relationships find a way to solve these types of hard problems.
The dating scene isn’t easy, and arthritis doesn’t help, but our tips on dating with arthritis can help you feel confident and ready to mingle.