Managing Relationships when You have Chronic Illness

Relationships can be difficult when you are healthy, but adding chronic illness to the mix can make it even more challenging. Strengthening and maintaining relationships with parents, children, friends and/or your significant other is especially important when you are chronically ill. Here are suggestions meant to stimulate your imagination as you think about ways to keep your relationships strong as you battle postural orthostatic tachycardia syndrome, mast cell activation disorder, Ehlers-Danlos Syndome, fibromyalgia, and chronic fatigue syndrome among others.  Your illness may actually help you to strengthen your relationships as you learn to be real with each other and deal with your illness together.

Tips for dealing with your chronic illness in relationshipsDating picture

You deserve to be loved. It is easy to tell yourself that you won’t find anyone who would love you, or that you don’t deserve to be happy. Neither of these is true! Chronic illness should not deprive you from the joys of being in a loving relationship. You deserve someone who is loving, supportive, and accepts ALL of you, including your illness.

Don’t focus on your illness too much. You have so much more to offer than your daily struggles with chronic illness. Obviously you can share those, but don’t dwell on illness. Discuss shared interests, what’s happening at school or work, and create dreams together. Share all sides of yourself, not just the part of you that is ill. You are so much more than the sum of your symptoms!

Check in with your friend or family member about their feelings. Everyone has bad days and their own feelings about a wide variety of issues. Ask your significant other about their feelings. Be careful not to downplay their problems because yours might be worse in comparison. It is important to maintain balance in the relationship.

Get creative with your dates. Depending on how you feel that day, going out to dinner and a movie may not be possible. What else can you do? You are limited only by your imagination! Get takeout food so that you can stay home and watch a movie, play a game, listen to music or work on a puzzle. Create a tent and have a picnic in the living room.  Have a bonfire and make 'smores in the backyard. Use your creativity to make an interesting date without tiring yourself too much.

When should I disclose my illness? There really is no perfect time to share your diagnosis with someone that you like. Your personal preference and level of comfort with that person may dictate when you feel comfortable sharing this part of you. If you are worried that they won’t like you anymore, consider evaluating whether this person is worth your energy.

If you have to postpone because of your health, make that clear. It is easy for your loved one to have their feelings hurt when you postpone. Reassure them that you want to see them, but that you don’t feel well enough and will have to postpone until you are feeling a bit better.

How can your make your loved one feel special when you feel terrible? Unfortunately, the chronic nature of this illness means that you need to find ways to maintain relationships even when you don't feel well.  There are small ways to really focus on your relationship with your partner, children, or other significant people in your life.  Here are just a few ideas.

  • Leave silly or loving notes where your loved one can find it
  • Put down all electronic devices when they return home
  • Spend quality time watching your favorite shows or movies together
  • Acknowledge when someone helps you and thank them
  • Make a favorite treat for them when you are well enough
  • Give them a back rub for a few minutes
  • Buy their favorite snacks or another small treat
  • Play board games, cards, or Jenga on the floor so that the ill person can recline on pillows but still participate
  • Word games: 20 questions, "battle" back in forth in a category to see who runs out of ideas first (e.g. name US Presidents)
  • Sing songs together
  • Listen to podcasts together
  • Hug, kiss, or tell them "I love you" when they leave home
  • Reminisce and revisit places from early in your relationship
  • Give them time to settle in at home before springing big news about your health on them
  • Send a silly selfie to them when they are away

Tips for being there for someone with chronic illness

Learn as much as you can about their illness. A person with chronic illness has a need for supportive relationships. Understanding their daily life can help you know what impact their illness may have on your relationship. It is important for you to assess whether you are ready and willing to enter a relationship with a person with chronic illness.

Be honest as you talk about their illness and your relationship. Just as you want your ill friend to be honest about their medical condition, it is just as important for you to be honest about your feelings. Be flexible if your significant other doesn’t feel well enough to go out. Share all of your life with them, even if they can’t participate.

Understand that tears are normal.  Dealing with the realities of chronic illness is hard and tears are a good natural release for all of the pain, fatigue, nausea, dizziness and other symptoms. You don't have to fix her - just comfort her as she cries.

Find something that makes them laugh.  A joke, funny face, movie scene, picture.  Anything that makes your ill friend or family member smile will help them when they are at their worst is a blessing!

Do your own thing sometimes.  People with chronic illness typically don't want their friends and family to miss out on their own lives.  While you are out at work, shopping, or blowing off a little steam, they will rest and enjoy some quiet time.  Bring back some great stories to share at the end of your day!

Don’t take their illness personally. If your ill friend or family member needs to postpone or leave early, please don’t take it personally. Symptoms can come and go, and are more likely to appear as the person becomes tired. They have no control over their illness or when symptoms will appear, so please don’t punish them.

Tell your own family what they need to know to understand my illness.  It is important for spouses to let their family know major symptoms and what can be physically tolerated by your significant other.  Misunderstandings can occur if they don't understand her physical limitations.  Realistic expectations can go a long way to helping these extended relationships.

Don’t pressure your date to consume alcohol or use other substances. Many with chronic illnesses are taking medications that don’t mix well with alcohol or other drugs. Understand this, and respect their decision if they decline.

Resources:

5 Lessons I’ve Learned As the Partner of Someone with an Invisible Disability

The Dating Game: Finding a date is always daunting. When you have a neurologic condition, it can be overwhelming. We sought advice from people who've been there to help you navigate the challenges.

100 Ways You Can Love Your Husband HIS Way