This is not a substitute for medical advice, nor is it meant as professional consultation with a mental health professional. If you have ongoing symptoms which interfere with your functioning, please seek appropriate help.
Disease is not sexy. Neither is chronic pain or illness. We shy away. We don’t want to talk about it. We hope if we ignore it, it’ll go away. But it won’t. We’re a culture obsessed with youth, beauty, vitality, wrinkle creams. We refuse to look death in the eye.
We’re aging everyday. It’s inevitable: we will get sick. With luck, it’s finite and you will recover. But what if you endure ill health every day? It’s unrelenting for years, no cure, little or no relief.
We suffer from many conditions where our only option is to manage symptoms: diabetes, arthritis, Parkinson’s, MS, chronic migraines, irritable bowel disease, fibromyalgia, to name a few. Chronic illness disrupts living, often leading to depression and anxiety. Common feelings include:
- Shame and embarrassment.
- Worry about being a burden or “dependent.”
- Fear of rejection.
- Overwhelmed by handling a relationship and the demands of living with illness.
- Guilt about not being “equal” to partner.
- Struggling between feeling isolated or alone and wanting to be with someone.
- Missing emotional or physical intimacy.
- Feeling undesirable, out of control or helpless.
- Feeling guilty that your partner has to put up with or cope with you.
- Judging yourself as “less than.”
- Feeling trapped in your body.
As a side effect of medications, one of my clients with Parkinson’s suffered from erectile dysfunction. He felt unworthy, undesirable, and unable to please his husband. Another client with MS judged herself unsuitable, inadequate, and defective because she predicted not being able to have a child. Another client with colitis, having episodes of uncontrollable bowel movements, felt ashamed and dirty. This led to him feeling anxious and sexually inhibited with his wife.
Here are eight ways to have a strong relationship in spite of these issues:
- Focus on what’s positive and good about you. This goes beyond Pollyanna-ish affirmations. It’s not about placating yourself nor about empty platitudes. We all have beauty and goodness within. You do, too. Challenge yourself to reach inside and pull out what’s shiny: your resilience, your grit, your determination. Don’t feel you have any of these? How about your beautiful brown eyes? Don’t have brown eyes? How about blue? What about your soft skin and tough spirit? Your generous actions? Your kind heart?You are thousands of macro and micro great things. They make you. They color you. You define them. But chronic illness makes you forget. Remember: you are more than your disease, much more than your pain. The more positives you rack up, the more it will spill over onto your partner and create a well of love from which you both can drink.
- Talk to each other. Few of us actually sit down, look each other in the eye, and make a real connection without shutting down or reacting. Sit down with each other and without distractions (no phones, TV, gadgets), reach out and make physical contact. Lean over and touch your partner’s knee, hand, shoulder, hair — this signals readiness, attentiveness, openness. This says, “game on, let’s go!” Share whatever and however.
- Take a risk: feel. Get closer to yourself, and actively let yourself feel your emotions. Experience your vulnerability in front of your partner. This reflects your trust. Not being rejected will strengthen you. If you are rejected, you can start the process of figuring out what went wrong between you both, and whether it can be fixed.
- Express gratitude. Do you love the thickness of his hair? How she smells? Him getting up 10 minutes early to make you tea? How about him opening your car door? The goodnight kiss? Her picking up food for you both? You’re registering what’s positive and actively feeling good about it. Let it wash over you. Steep yourself in it, and feel warmed. When you rack up a wealth of positives, the negatives have a harder time crossing the barrier into your self.
- Soothe each other. Use your kind words, give reassuring touch, a loving look, a lingering and warm hug. What do you know about your partner? Do they like baths? Picnics? Walks on the beach? Action movies? Whatever it is, go out of your way to give them a comforting experience. Prioritize your partner and make sure they feel loved. Taking the focus off yourself, getting off the negative obsessive loop about your physical limitations — this relieves you. Love begets more of the same, and you’re creating a positive feedback cycle. The love you give out will ricochet back to you. You are not doing it for this self-centric reason, but action/reaction: this is the law of human interaction.
- Soothe yourself. The strategies are the same! Start a conversation with yourself. Use your kind words, hold your own hand, place a hand to your heart and feel it beating. Breathe. Think of the good and positive. Allow your mind to hover over these. As your mind drifts into the negative, gently bring it back to the positive, and focus on your pulsing breath. One breath at a time, take your time as you breathe. As you inhale, notice your belly moving out. As you exhale, your belly will be moving in. Take solace in your life force, your breath.
- Tell your partner what you need. Do not give your partner the silent treatment. Do not indulge the tendency to wallow in unhappiness, with the mindset, “If he or she really loves me, he or she would know what I need, and I shouldn’t have to ask.” Remember, you must teach your partner how to love you. When, why, and how should your partner give to you? Tell them, clearly and explicitly. Leave no room for confusion or mixed signals. For example, “I feel hurt and disappointed when you didn’t ask about my doctor’s appointment today. I wish you’d remember; it’d make me feel cared for. Could you hold me tightly?”
- Stay connected to the world. This buffers against isolation, and acts as further adhesive for your relationships with others. Socialize whenever you’re able. Every bit counts. Make it a point to chat with a neighbor, the mailman, the grocery clerk. Get out of the house, if only to the dog park. This helps guard against total depletion.
Do some or all of these. On your hardest day, if you do just one of the above, you’re adding to the relational dance, and to your emotional bank account. Balancing your illness in a relationship is hard. But with practice, you’ll build muscle memory, and over time, your habits will became automatic. With consistency, you’ll feel relaxed, content, and at more at ease.
Pollin, I. & Kanaan, S.B. (1995). Medical Crisis Counseling—Short Term Therapy for Long Term Illness. New York, NY: W.W. Norton & Co, Inc.
Taylor, S. & Epstein, R. (1999). Living Well With A Hidden Disability. Transcending Doubt And Shame And Reclaiming Your Life. Oakland, CA: New Harbinger Publications, Inc.
Thernstrom, M. (2010). The Pain Chronicles—Cures, Muths, Mysteries, Prayers, Diaries, Brain Scans, Healing, And The Science Of Suffering. N.Y: Farrar, Straus, & Giroux.