“Sometimes I feel like the nurse, the advocate, the case manager, the social worker – and nothing is left at the end of the day for my spouse.”
Mito is a particularly difficult chronic illness for a partner (not to mention the patient) to understand. With its ill-defined nature and tremendous variety of health problems, the difficulty with diagnosis and uncertainty over the progression of the disease complicates matters. Some things to keep in mind and might help you and your partner are:
- Make a new plan
- Remember what brought you together
Good communication is the most important aspect of any relationship. This is particularly important between a Mito patient and his or her partner. It is important to communicate how you feel on any particular day as this can vary so much from day to day with Mito patients and is a hard thing for other people to grasp. This is particularly true with the adult-onset form of the disease, where a partner is used to a more active spouse.
The chronic and extreme need for rest by the Mito patient may be the hardest thing for the non-involved spouse to understand and live with. An inspirational story is called the Spoon Theory. This story can really go a long way to helping put into words what you are feeling.
Make a new plan
A plan can be developed of how to share the tasks of the family for that day. It will not serve you or the family well if you try and take on more than you are actually able to do. Partners should plan who takes responsibility for what tasks. Many times, a Mito patient only has so many “good” hours in the day in which to function. Let your partner be aware of this, and you can plan together how to best “spend” your time that day. It is important that both partners be aware of each other’s priorities to be able to meet them daily.
Naturally, expectations have to be lowered to some degree to accommodate the needs of the patient. When the Mito-involved partner is feeling particularly ill or tired, this too needs to be communicated so that the expectations are lowered for that particular time and the non-affected spouse knows he or she needs to contribute more to the working of the family.
It is important for the Mito patient to realize that the non-afflicted spouse also has needs to have some fun time away from the house and responsibilities.
Remember what brought you together
In this busy world of ours it is often difficult to find time for our partner when dealing with the multiple demands of a home, family and job. Add multiple health problems presented by mitochondrial disease, and this situation becomes that much more difficult. However, as in all relationships, it remains very important to find the time to nurture the relationship and find activities that a couple can do together. In the case of mitochondrial disease, these activities are probably by necessity quiet sorts of things, such as watching a movie, having a quiet dinner together, etc. It is important to try and find some money in the budget to pay for a babysitter to allow for these together times.
It is important that the afflicted partner realize that his or her disease is not necessarily the most important aspect of family life and try not to demand too much attention to the detriment of their partner and family as a whole. It is a good idea if the Mito patient tries to keep up his or her appearance as much as possible. Not only is this good for his or her own feelings of well-being but for their partner’s as well. If you are having difficulty accepting this new version of yourself, seek counseling. Grief is a normal feeling when coping with mitochondrial disease, but if feelings of sadness or anger are predominant emotions, this can take a toll on your relationship. Even the most compassionate partner can feel resentment when confronted daily by the onslaught of negative or hostile emotions.
However, the spouse of the Mito patient needs to know that their partner is suffering, not only physical discomforts but the psychological effects of dealing with a serious chronic disease. These feelings need to be discussed between the partners, to include each person’s feelings toward the illness.
As always, if you and your partner are having a hard time talking about these difficult issues, it could be wise to seek the help of a professional counselor.
Know that you are not alone on this journey, and we encourage you and a your spouse to join our Weekly Support Calls or call Mito411 for support.