Fibromyalgia & Intimacy

This is one of the most common questions I hear from young women with chronic illness, especially "invisible" conditions like fibromyalgia that don't affect the way you look but definitely impact how you feel.

The good news is you can't give your date fibromyalgia, so there's no urgency when it comes to disclosing your condition. But healthy relationships are founded on honesty, and the longer you date the more likely your guy will notice something's wrong—so it's probably a good idea to start the conversation soon.

There's no need to be dramatic with your revelation; in fact, the bigger deal you make out of it, the more likely you are to freak out your mate. Start with something casual like, "You may have noticed I never go out on Friday nights. That's because I have a health condition that makes me really tired sometimes, so I take Fridays off to recharge."

Once you've started the conversation, you can move on to answering questions about fibromyalgia in general and how it affects you specifically. Then, be ready to recommend a favorite resource for more information so you can get back to having fun. You might be surprised at how opening up can bring you closer.

Too much? Too little?

A fine line exists between sharing your experience to receive compassion or support and overwhelming others with more information than they can process. It can be tough to know how much to reveal, and unfortunately there are no official guidelines when it comes to disclosure.

But for starters, keep in mind that you don't have to share every little detail. The real "keepers" out there are at least somewhat empathetic, so, for example, if you mention many times throughout a concert that your lower back and legs are hurting terribly, it's likely your date will feel a strong desire to help you—and lots of frustration that he can't make the pain go away. But if you mention instead that you're hurting and may have to adapt your plans to accommodate your need to sit down instead of stand—so you can stay at the concert and have fun—you're more likely to get the support and understanding you want. By limiting the details, you're less likely to overwhelm and frustrate your date.

All this is not to say you shouldn't acknowledge your symptoms, or that you should hide how you really feel from a love interest. On the contrary, it's vital that you learn to be as open and honest as possible about your condition. You should never feel ashamed to have fibromyalgia and to ask for what you need.

Issues of intimacy

Honesty is just as important when it comes to intimacy. If you live with pain and fatigue, it's understandable that your symptoms will sometimes interfere with your sex life.

If you're in a serious relationship, you'll have to work on ways to ask for what you need. This might mean arranging pillows so you can get in a position that doesn't aggravate your sore spots or scheduling "date nights" so you can reserve your energy in advance. Having a sense of humor and playfulness will take you far. Intimacy plays an important role in relationships—it can enhance your connection and your physical and emotional well-being—so it's worth the effort to negotiate for your needs. (On the other hand, if you're considering having a fling, your symptoms might simply dictate if you're "in the mood" or not.)

Whether you're just starting to date someone or you're in a long-term relationship, your symptoms are yours to live with and manage—and your love interest can take any number of roles in supporting you with that challenge. As your relationship evolves, so too will the ways you ask for and receive support. (And ideally, you'll give support, too—just because you have a chronic illness doesn't mean you're exempt from being a good mate.)

Disclosure: Friends, family and coworkers

It's not only romantic relationships that require careful consideration when it comes to disclosing your diagnosis. A big part of living well with chronic illness is developing a support "team" of people who understand your condition. So if you haven't told your friends and family members yet, it's time to start.

You might want to try the same approach I recommended above to start each conversation, but keep in mind that every person you tell is different and will react uniquely to the news. For example, your parents might take it really hard at first—it's possible they still think of you as their kid, and if they don't understand fibromyalgia, it could seem threatening. This is not the kind of thing you want to announce to the whole family over Thanksgiving dinner. Find a time when you can have a thorough discussion, and be prepared to offer resources to help allay their fears.

On the other hand, friends you hang out with frequently might be more familiar with the condition and may even celebrate a diagnosis that explains all the difficult symptoms you've been experiencing. Teach them about your needs, and they'll become your allies—on big flare-up days, you need those strong relationships to help keep you positive.

Finally, before you tell coworkers or your boss, take a moment to consider the ramifications. Some businesses have terrific atmospheres when it comes to employee well-being and can work with you to facilitate any adjustments you need. Unfortunately, not all organizations have an accommodating attitude, and you may even face discrimination because of your illness.

Only you can determine the best way to handle disclosure, but there are lots of resources to help you understand your rights and decide if, when and how to disclose that you have fibromyalgia.