How to address relationship obstacles head-on
When tackling relationship hurdles, there can be many different approaches. Rebuilding your casual and intimate connections will likely require a combination of methods and can take time. That’s okay. The important thing is to make time to nurture these relationships so you can have a strong support system and live a more fulfilling and rich life that satisfies the basic human need for connection.
Here are some ideas to consider:
Find groups of like-minded people
Unfortunately, not everyone in your life will understand what you’re going through or be capable of offering support; this is why finding like-minded people is so important. Acromegaly support groups, for instance, can help you feel heard and validate your feelings and experiences. You might also learn how others who are further along in their acromegaly journey have navigated evolving relationship dynamics.
“There is nothing that replaces talking to another patient who is going through something like what you’re going through.”
–Linda Rio, MA, MFT
Consider exploring nonprofits and patient-centered organizations, such as Acromegaly Community and Pituitary Network Association, that provide access to support, resources, and community forums.
Communicate regularly with your healthcare team
Many of the symptoms that may affect your relationships such as fatigue, headaches, joint pain, or mood swings can and should be addressed with your doctor or healthcare team. If you can, find an endocrinologist who specializes in acromegaly, and make sure it’s someone you trust.
Once you have a healthcare provider you like, practice being open with them about all your symptoms and their effects. This might feel uncomfortable at first. For instance, if you have severe headaches, this may affect your ability to socialize, hold conversations, or do your work. Having this information can help your doctor make targeted medicine recommendations. Know that many people with acromegaly have tried several medications before they found the one that was right for them. Clinical trials can be sources of new therapies as well.
You should also feel empowered to bring up questions or concerns about how acromegaly affects your sex life. Not all doctors will know to ask about this area. If talking about sex with your doctor feels embarrassing, try writing down your concerns and sharing them with your doctor that way. Do what works for you!
Therapy can help you navigate all kinds of relationships, including the one with your spouse or partner. For example, many people find it hard to talk about sex or intimacy with their significant other, especially if some physical changes make you feel awkward. A therapist can help you find the language to work through these obstacles.
“People don’t always realize that being able to sit down and talk about what it’s like to live with a rare disease often requires the help of a therapist. It can help put people at ease, provide some words, and normalize experiences. It can be tremendously helpful.”
–Linda Rio, MA, MFT
For a lot of people, seeing a therapist might be intimidating. It requires a certain level of vulnerability to share your experiences living with acromegaly and how they are affecting you. A great therapist will ease you into those difficult conversations so you can take things at your own pace. You can even find a therapist who has experience working with people with rare diseases such as acromegaly. For guidance on how to find a therapist, check out this resource.
Make fun a priority
Life can be hard enough, especially when you have a rare disease like acromegaly. That’s why injecting fun into your life or trying something new is so important. Taking time to do things that bring you joy might be something you don’t even realize you need.
For romantic relationships where the spark might have fizzled, take baby steps to reclaim or rebuild that physical and emotional intimacy. For example, think back to what you and your partner did when you first started dating. Did you love movies? Picnics in the park? Bring some of these activities back into your routine. Remember, romance isn’t only about sex. Take a moment to notice what it feels like to sit next to your partner or to simply hold their hand. Bringing dating back into your routine is helpful, Rio says, as it can help things feel fresh and fun again.
Rekindling can apply to friendships, too. Make it a point to schedule a “friend date” with a close friend once a month or at a frequency that works for you. Go for walks, have lunch, or take an art class together if you have the energy. Remember what it was like to have fun together and just be.
During the pandemic, you heard about people forgoing shaving or sometimes even wearing pajama pants on a Zoom call. When you aren’t regularly interacting with people, there can be less motivation to practice self-care. However, taking the time to put on an outfit you feel good in or going to the barber or salon can have a profound impact on our mental and emotional health. Of course, there may be some days when you’re too tired to do any of these things, and that’s okay. Give yourself some grace during those times and celebrate even small moments of self-care.
Other self-care ideas include making sure your diet is balanced and contains lots of fruits and vegetables, which might make you feel better. Try a new recipe or ask a friend to come over and try it with you. Maybe you scrap the home-cooked meal and order takeout together. Just sitting next to someone on the couch or sharing a meal can be an intimate experience that makes you feel more connected.