Harley & Rose, They Just Lost It For A While.

This post was originally written for 12 More Pages in 2010.

Relationships are hard work, just look at the ridiculously high divorce rates. Hollywood and television have indoctrinated us to seek out the fairy tale, to find our soul mate who will make us complete, slay the dragons and hold us tight for all eternity. Unfortunately, life isn't like the movies (not that I still don't wish I was Juliette Binoche in Chocolat with Johnny Depp turning up on her doorstep at the end of the movie; but hey, we're all entitled to a bit of fantasy every now and then). Relationships are filled with ups and down's, even with the best of intentions and the most perfect of circumstances. When you add a chronic illness to the mix the strain it places on a relationship can be overwhelming. Any little problems that existed beforehand tend to be amplified by the stresses associated with a partner's illness.

We agree to “for better or worse, in sickness and in health” but it is very different when you are actually faced with the situation. Whether you are the person who is ill, or the significant other who is well, what we imagine we can deal with and what will occur should a partner become ill, can bear little resemblance to the reality. Chronic illnesses like dysautonomia, can't be contained in a nice 50min House episode. Yes, House may give you a diagnosis and a drug, but unlike the dramatic life-saving, experimental brain surgery that saves the actor in the last 5 mins of the show, dysautonomia and it's impact persists long after the credits role. In fact, it can persist from Episode 1 Season 1, all the way to Episode 48 , Season 50, often with little change. No one makes a TV series like this for a reason. How does the audience keep interested and maintain compassion for the character who is permanently ill. It all becomes boring, fatigue sets in, and ratings drop. We are programed to expect a resolution to the 'crisis'. Unfortunately with chronic illness the 'crisis' may never end and can become a permanent state of living.

Being chronically ill dramatically changes intimate relations. Both individuals change, and the nature of roles within the relationship change. For the person who is ill your self-image is dramatically altered. We may see ourselves as the nurturer or provider, a leader or the go-to gal, chronic illness doesn't care . Hell, Cosmopolitan and the like continually tell me I can and should be able to do it all, why would I think otherwise. When you are chronically ill you can no longer fulfil these roles as we have them laid out in our heads. We are forced to re-examine who we really are and our place in our relationship.

It's hard to love yourself when your body betrays you and when you cannot participate in life as you want, and feel, you should. If your own self-image is so low how can you have anything to give to a relationship. How can you support your partner when you are unable to support yourself. Doubts set in. You begin to wonder why your partner would even want you when you don't even want yourself. How do you maintain an intimate relationship when you are permanently exhausted.? Nausea and dizziness are hardly conducive to getting 'in the mood'. By that I don't necessarily mean sex. The general day-to-day intimacy of simply touching, hugging and kissing, the emotional and intellectual intimacy, are often difficult when you are feeling so ill you just want to lie down in a corner and cry. These feelings begin to colour your interactions. You interpret the actions or words of your partner in light of your internal dialogue, and react similarly. Your partner has no idea why you are acting the way you are and misunderstandings can start to build.

Equally, if you are single and want to find a partner, it is easy to wonder what you have to offer to someone else, or why anyone would want to be with you and all your chronic illness baggage? How do you explain such a complex illness without making a prospective partner want to run for the hills? You cannot participate in the normal dating or relationship activities. Going to the movies, out to dinner and parties are often not an option. You can feel that you are condemning your partner to a life of isolation. You feel a burden. You attribute your feelings to your partner when in fact they may never have even considered you or the relationship is that light.

For the partner who has to watch their loved one so ill, it can be over whelming and confusing. When you love someone you want to be able to help them, you want to take away the pain. It is common for care-givers to feel impotent, or overwhelmed by the situation. With an acute illness, eg a knee surgery, you know there is an end. You can sustain the care-giver role because you understand it and know that in a couple of months the person will be back to their old self. When there is no predictability, no path, no respite, as with chronic illness, care-giver fatigue can set in. Burnout is common in those who care long term. It can be hard to understand this as the sick person. I know at times I have thought, “I'm the one who's actually sick. 'You' need to get over it and grow a pair”. It's hard to have compassion for others when you are permanently ill yourself. Even knowing logically that it is hard for my family and friends I often don't have the energy to deal with their issues. When it is your partner you do have to make an effort to understand their feelings and frustrations, as this can help the relationship and you in turn. Sometimes you need to prioritise your relationship as we do other things.

Well partners can fall into certain roles which may, or may not work. They may become the 'hands-on' carer who is involved in every step. Alternatively they may become 'over-protective' and wont let you do anything. There are also those who withdraw from the relationship because they don't know what to do or how to cope. Many carers don't want to admit that they can't cope or don't like the fact that their partner is ill. They may feel guilty because they feel their partner is a burden or that they are no longer the person they married, and don't want to feel that way. Again this colours how they interact with the sick person. In both cases, partners may feel that their feelings are wrong and that they are abnormal, when in reality they are normal reactions to an abnormal situation.

In so many cases both partners are feeling, lost, alone and frightened but don't feel they can tell the other one for fear of burdening them. Or they may be scared that giving voice to their fears will make them real. If you don't talk tensions can quickly arise and begin to fester. A simple misunderstanding may end in a huge argument. As a sick person I know I hate being fussed over. If my husband were to fuss over me and always treat me like a sick person it would change my opinion of him because he wasn't meeting my needs. I would wonder why doesn't he know I'd hate that. I would be more stressed and that would make my symptoms worse and it would become a vicious circle. However, if I don't tell him how would he know? It can be hard to be open and honest in a relationship at the best of times, and chronic illness is frequently uncharted stress-filled waters for both parties.

Dysautonomia is a particularly difficult disease to understand and explain. The unpredictability of symptoms and the way it impacts on our lives is hard for even us to understand. One important step in helping a relationship is to help educate your partner. Encouraging them to go your appointments or asking your doctor to talk to them can be particularly helpful. If your partner can understand that you may have to cancel a dinner at the last minute due to your symptoms, it can reduce the stress considerably. Conversely if your partner thinks you should “just get over it” and makes you feel 'bad' or guilty for ruining your dinner plans, stress levels can spike and make your overall health and relationship much worse.

It is important to re-negotiate your roles in the relationship. You need to set aside a time to talk, not wait till you are both upset and in the middle of a fight. In many ways this is why seeking out a professional for counselling can be the best option. No matter how much we might wish it otherwise, dysautonomia involves disability. We can no longer do it all. We need to sit down with our partners and work out who is going to do what. It might be the simple things such as who makes dinner. Or it might be the complex things like either earning a wage or organising the bills. Before being ill I worked and took care of 90% of the kids and household chores. Now I can't work and my husband and kids have to help out more. We had to re-negotiate the way things worked. Part of that process was my husband becoming aware of how dysautonomia affected me day-to-day and understanding that I now need to strictly prioritise things. We certainly don't always get it right but we are slowly getting there.

It's important for both partners to understand that a good relationship is not based on how many times you go out , how clean you home is, or if you have the latest fashions. Without fail, good relationships have good communication and find enjoyment in each other regardless of where they are or what they are doing. It is more important to prioritise the incidental intimacy of sitting on the couch watching TV together rather than going to a work BBQ because it is expected, and then being laid up for a week. It doesn't need to be complex. It can be simple things such as resting for the day, rather than doing loads of washing, so you can go out for dinner for an hour with your partner. Or going twice a year to a Gold Class cinema with foot rests and recliners, rather than failing at a normal cinema 20 times.

Most of us who are ill realise we need to have an non-health related outlet to maintain our sanity. It is equally important for the well partner to have an outlet. As the sick person we are more likely to be offered counselling or join a support group, this isn't always offered to the partner. The outlet doesn't have to be a formal support group. It may be participating in a sport or social group. Often just being in an environment totally removed from home and illness can be enough. For example, Saturday's my husband plays sport all day and then goes to the clubhouse after for a beer and 'man time'. It's his way of letting go of the stress and rebalancing. It helps keep him sane (and me) and in turn means he is more relaxed and switched on when he gets home.

In reality the things that you need to do to support your relationship when you have a chronic illness are the same as in any other relationship. If either partner feels unsupported their will be issues. If the partners don't talk there will be issues. If you don't re-negotiate roles over the years there will be issues. Having a chronic illness simply forces the issue and magnifies any existing problems. It is not easy either starting or continuing a relationship when one partner has a chronic illness, but it is possible with work, and accepting that there will be ups and downs. All relationships are a work in process. Chronic illness just gives us a different challenge.

“life is a bitter disappointment
she would hear young Harley say
if you find something more important
I will not stand in your way

like static on the dial
a look come back in style
Harley and Rose
they just lost it for a while”

(“Harley & Rose”, The Black Sorrows song :1990)

We all lose it for a while, but more importantly we mostly get a chance to find it again.

Cheers

Michelle :)