Having HNPP thankfully isn’t the end of the world, but it does make things rather difficult when it comes to relationships. This may not apply to you if like many of the individuals on the HNPP Facebook groups, are already happily or regularly married or in a relationship of any kind. But for those who are trying to balance both worlds, many become apprehensive of making another commitment, when all you’re trying to do is look after yourself. So how do you manage?
Relationships are always work. Add significant stress to the situation and they’re extra work. And HNPP falls under the “stress” umbrella, which tends to add complications to every stage of a relationship, just as it gets in the way of everything else.
Dr. Morwenna Opie, a Clinical Psychologist who works at the Nightingale Hospital in London, UK, says that “healthy” relationships are important. Dr. Opie, who has been diagnosed with POTS secondary to Sjögren’s Syndrome, states: “Healthy, supportive, and fun relationships can be our greatest asset in shaping a happy and fulfilling life, and this is especially the case when opportunities for physical activity are more limited.”
However, she adds a warning to this statement: “maintaining unhealthy relationships can be more toxic to our health as those chocolate binges or caffeine or whatever else we might have resolved to do away with this month. The evidence continues to accrue demonstrating that social stressors and anxiety takes their toll on our immunological functioning, and all aspects of our physiology, with the potential to cause a vicious cycle of deteriorating physical and mental health – and relationships.”
The most important relationships she says are friendships which require constant maintenance just like any other kind of connections, which is the first step ahead of dating. Think of it as the steps to rehabilitation. Unlike trying to stay sober, your priority is first to yourself and maintaining the connections you already have. Hence, just like in Alcoholics Anonymous, it is recommended that people who are still within the first year of their recovery should avoid beginning romantic relationships.
The first few months of recovery are often described as an emotional rollercoaster because there is so much going on. The last thing that an individual will want to do will be to add the stress of a new relationship to the mix. It is going to take all your attention to make it through this early part of recovery. It’s also important for you to come to terms with yourself during this time.
As a result, the worry for many trying to date for the first time after a diagnosis is seeing yourself differently, acceptance from the other person, and generally managing the symptoms on a day-to-day basis. Therefore, there are several questions you need to ask before making that leap.
Are you in a position to date?
- Your symptoms are manageable – it may seem obvious but being bedbound or homebound will clearly present its own problems. Unfortunately, this alone may take you out of the game since your symptoms may require you to stay at home, sometimes out of commission entirely.
- Coming to terms with the condition – if you’ve only recently been diagnosed and haven’t yet worked through the five stages of grief, you’re not in a position to start dating. You’re only ready once you’ve learned to accept your illness and begun to feel at ease with yourself.
- You deserve love like everyone else – if you’re constantly down on yourself and steeped in negative thinking, you’re not ready to date. Books that I can recommend are How to Live Well with Chronic Pain and Illness: A Mindful Guide by Toni Bernhard, who was a law professor for 22 years at the University of California, before falling ill and has written several very useful books. As well as You Can Cope with Peripheral Neuropathy by Mims Cushing and Dr. Norman Latov.
- You have a life outside your condition – if your chronic illness defines you instead of just representing one part of you, don’t think about dating. Even if you can no longer hold a regular job, you must have something going on in your life to attract a potential partner. This is where hobbies are useful.
What to look for in a partner
You’re ready to jump into the crazy world of dating, so now what? Well, before filling up your calendar with potential male or female suitors, you should have a clear idea of the type of qualities to look for in a mate. Best to look for a partner and not a caregiver:
Your date should be:
- Accepting – they understand your limitations and doesn’t try to convince you otherwise.
- Adaptable – they try to find activities both of you can enjoy and doesn’t get upset when you’re forced to cancel at the last minute.
- Dependable – they are there for you when your illness becomes too much to handle on your own.
- Humorous – they try to make you laugh during tough times (and good times!)
- Respectful – they treat you well and admire your courage without “babying” you.
- Supportive – they ask questions about your illness and strive to learn more about it.
- Responsible – they are careful with money especially when factoring in costs to treat your illness.
When should you reveal your condition?
Dr. Gail Saltz, M.D., a renowned psychoanalyst, columnist, bestselling author, says: “In the dating world, it’s really about when you choose to discuss the topic of illness. It’s important to be thoughtful about when might be the best time; not disclosing this part of yourself too early or waiting too long.”
One of the biggest challenges about dating when you have a chronic illness is trying to figure out when to tell the person you’re dating about your disease. Some people will tell you that you have to wait until things are more serious between you two before the big reveal about your illness.
Other people will tell you it’s absolutely mandatory to inform them up front, because they should understand that dating you might have some challenges so they can decide if those challenges outweigh the awesome privilege of getting to be with you. There is no exact science to it.
The most important part is to not feel obligated to share such a sensitive and personal part of your life if you’re not ready yet. Let your illness come up naturally (well, as natural as a discussion about a chronic illness can be anyway) and when you feel comfortable.
Ken Robbins, MD, a clinical professor of psychiatry at the University of Wisconsin–Madison says that if you’re especially worried that your health secret “is likely to define you before the person has gotten a chance to know you at all”, then don’t mention it on the first date.
“I don’t talk about my illness on a first date. I may mention why I don’t eat gluten or, “Yeah, I have a bum knee so I can’t run! It sucks!” But I don’t dive into details.”
“How I Learned to Date With a Chronic Illness” – Jacqueline Raposo, Cosmopolitan
But there’s one exception and that’s if personal information about you living with a chronic illness is already out on the internet. In this case, you may want to tell your date sooner than later because there’s a good chance they have Googled your name and found out about you.
How should you reveal it?
Unfortunately, there’s no easy way to tell your date about your chronic illness. Here are some tips to revealing information:
- Practice what you’re going to say – rehearse your speech with a trusted friend or visit a therapist to talk it through, suggests Dr. Robbins. He adds: “Its good to have somebody as a sounding board in a situation like this,” he says. “How you handle this is not something your partner is likely to forget.”
- Be casual but confident – creating a conversation bridge or segue will be useful such as, “I feel like were heading in a great direction, so I wanted to tell you something.” Just don’t overdo it: “You don’t want to frame this in a way that ends up making a bigger deal of something you don’t want made into a big deal,” Dr. Robbins says. In other words, make your delivery as drama free as possible.
- Seeking out relationships online – if you tend to meet potential partners through online networks such as Facebook or Match.com, you shouldn’t hint in your profile that you’re concealing a health secret. However, if you’re nervous about rejection or misunderstandings, you might be more comfortable dating someone with similar health issues. Just make sure you’re in the right frame of mind for this, and be prepared for rejections. There are many niche sites that cater to people with specific conditions, and they’re a great way to be up-front with potential mates who are in the same boat:
- Prescription4Love – many health conditions
- Special Bridge – mental and physical disabilities
- Glimmer – a new mobile app with “all people in mind”
- Whispers4u.com – for disabilities
- Know when to give your partner space – Rachel A. Sussman, LCSW, a New York City therapist and relationship expert, says it’s possible that there could be an awkward moment. “[If that happens], say, ‘I can tell by your expression that this is a lot to digest and I completely understand, and Ill give you the time and space to do that,” she says. Then, offer some physical distance but stay in contact.
- Don’t take rejection personally – “A good person will listen and be kind and not judge, but if [your health secret is] something they cant live with, that doesn’t make them a bad person,” says Sussman. “It just makes them a bad match.” And there can be multiple reasons for a rejection – many of which have nothing to do with you at all. If things were going well up until the time you told them, keep in mind that they rejected your health condition, not you. At the end of the day, it means that they were not the one.
Dating with chronic illness is hard for sure, and there are times when you may feel undateable. Self-care should still be your number-one priority. But there are many things you can offer your dates because you’re much more than your illness.
You could be a great listener, a deep empath, an entertaining storyteller. Sometimes dating is a great way to get yourself out of your head and out of bed, even when the latter seems impossible or undesirable at best.
In the words of Deepak Chopra:
“To value yourself is to love yourself. It is really from here that your love for others comes. If you value yourself a great deal, you actually have something to give to others.”
The fastest way to love and connection is to show the other person who you are right now, in this imperfect moment.
HNPP Wellbeing 