WHEN LYME MEETS MS – INSIGHTS OF A CHRONICALLY ILL COUPLE
In the Internet era, we often read or hear sad stories about how chronic illness destroys relationships. It is a painful topic that no one really wants to discuss about, because they will have face the ugly truth straight into the eyes. It takes guts to be candid about the difficulties of caring for a chronically ill spouse.
It also takes a lot of finesse, patience, empathy, compassion and commitment to deal with a chronically ill spouse or significant other. Sometimes one needs magician skills to run through the hoops of a moody, depressed partner. The staggering divorce rate among chronically ill people is crippling.
When both of partners share the burden of an illness, the risk of clashing is touching the roof. It is nearly impossible to prevent the relationship from failing, leaving alone keeping the flame alive. That’s for the regular folks, who have enough time to get bored of each other.
While faced with the cruel reality of a chronic illness, there is little space left for romance. The choices are limited, while its effects can be devastating. Usually when one’s needs (emotional, affectional, personal) are not met, words such as divorce or separation are often mentioned.
Finding the balance, the proper tools to navigate through the illness are key. Juggling with the personal needs and those of the spouse is challenging. It requires far more than love to persistently care for someone who is chronically ill. This dance between the moods, brain fog, physical pain, anxiety crises, episodes of depression, misdirected anger and resentment, poor communication is worth at least one Oscar.
The problems arising between the partners are never ending. Both need to have their needs met. Both are entitled to love, care and treatment. But who will get these first? Who will selflessly assume the caretaker role and burden himself with all that it entails? Which one of the two will be treated and cared first?
On what criteria they decide who gets to undergo treatment and for how long? Will they be strong enough to prevent self-pity and guilt crack the foundation of their relationship? What happens when both of the partners are in denial? Or when they relapse in the same time? What if there are children involved?
How can the two support themselves financially or handle the pressure of the daily struggle? This roller coaster ride ain’t getting easier! What about when financial reasons prevent both partners from obtaining the proper treatment and care? We all know that the cost of the Lyme treatment is not covered by the insurers. Thank God that the MS Society got this one covered!
These are only a few of the questions and concerns that the couple is faced with. There is no correct answer, since there is no cure! It’s one thing to be there for your chronically ill partner when you are healthy and a totally different story when you are sick as well.
Becoming a patient and a nurse in the same time is more difficult than you could imagine. In most of the cases, the partner presenting less symptoms, “the healthier one” decides to take on the caregiver role, to become the “helpmate”. Eventually it will wear him out, despite his noble intentions. He will burn out and realize that it is more than he bargained for. It will make him turn bitter, feel alone and drain all his energy, unless he sees some understanding or appreciation.
What it really takes to maintain a relationship going? It is a matter of how much you are willing to let go. Learning to enjoy small sporadic moments of joy and keep them embedded in your mind for the long rainy days. Learning to appreciate what you have instead of focusing of what you don’t or what you would have liked to have. Building a long lasting relationship requires a strong commitment and a combination of the following: love, care, determination, altruism, positive mindset, strong stomach, patience and nevertheless, hope.
The couple dynamics change when the two partners are sick. They surround themselves with the never ending whines and cries of their illness, they fall prey to fear and despair. They forget that life goes on despite all that. Somehow they neglect to acknowledge that they have the power to change something. They can change the attitude towards life and make life more enjoyable.
Here are some practical and valuable tips on how to keep your relationship going:
Celebrate small victories. If you are into the habit of keeping a symptoms track calendar, then it won’t be difficult for you to notice that a number of “X” weeks passed since you had a certain symptom. Remember life offers lots of lemons. All you have left is to enjoy the lemonade (Lyme & aid, in my case). That being said, put out the glasses and invite one more to the party. Engage your spouse in these small celebrations of life. You are not only sick patients, you are also humans with a living ticking heart!
Identify and eliminate stressors. Make a list of possible stressors and try eliminate them. If you notice a pattern repeating or a habit irritating your spouse, just ditch it! It is not worth another disagreement, your peace of mind is far more valuable.
Be thankful. Show gratitude. Find your own unique way of showing how you feel and how much you appreciate the efforts done by your partner. Try developing a new routine of writing thank you or funny notes and leave them in unexpected places around the house for your spouse to find. These little notes have the power to make one smile, laugh and turn a bad mood into a good one.
Be honest with each other. Keep in mind that being overprotective or leaving your partner in the dark can be easily misinterpreted, even if it is an act of love, done out of the fear of overburdening one’s mind or heart. In order to tackle certain topics such as financial issues, treatment options, or couple’s future, you need to be 100% honest.
Be open to suggestions. When your partner tells you something, or gives you feedback, don’t take it personally. Try to see how you can incorporate that into your daily practice/ routine.
Laugh more. Humour plays a key role in any relationship. It is well known that laughter helps improving the moods. “Till Lyme /MS do us part” does not sound anymore as a morbid joke. Dark jokes are welcomed. Humour has the ability to act as a stress hormone regulator, it enables the body to find a way to calm down. Improved oxygen consumption, slowed heart-rate, lowered heart pressure, and reduced stress are only a few of the benefits of humour.
Plan small. Whatever you are doing, plan small. Don’t overload your schedule trying to solve too many things within one day. Leave something for tomorrow. If you solve one thing per day, that is enough. Why getting yourself exhausted if it is not a life threatening situation? Don’t feel guilty if some days you can’t perform even that one task! Don’t be too harsh on yourself!
Exercise together. Performing a physical activity together, not only has the ability to make you achieve your fitness goal, but it can also improve the efficiency of your exercise. Working out together can increase your emotional bond and boost your romantic life.
Prepare/ plan meals together. Meal preparation can be a great way of spending time with your partner. Showing someone that you care does not mean you have to go out of your way and move mountains. No! It all consists in being kind, present and involved. Deciding what your weekly meals plan will look like can be practical and fun.