There is an old saying “Good boundaries make good neighbours”… this has never been more true than for those facing serious illness, diseases or disabilities. Although it is also one of the HARDEST things to do during some of the most painful and physically challenging times of our lives.

When I was healthier, and in much greater command of my body and actions, I could more easily aid myself in being able to set limits and boundaries about who has access to me,my time, my body and my efforts. That was the body I lived in for most of my life. That was the body I lived in, worked in, entertained in, loved in and planned a future in; that is the body I no longer have today.

The body I have today is unpredictable, painful, uncooperative and at the mercy of medicine, the weather, the doctors, pain, the healthcare system and the fates. I don’t have the same privileges and abilities that I once had and I must relearn how to interact with the world I once knew.

The great irony of the health system is that although it relies on those in need of medical assistance for money and to justify its existence, it actually does very little to work in with the needs of those seeking medical assistance. For example. If you go to hospital you are subject to THEIR rules, their timetables, their staffing, their attitudes, their administrative requirements etc even though you may not be capable of fitting in with any of these due to being not well or sick. Similar to the way that governments are more designed for helping and assisting politicians and public servants more than it actually helps citizens or tax payers. Even though you may be desperately in need of relief and assistance you will find that you will rely on the timing and requirements of hospitals and administrators even though you will ultimately pay for the privilege and have to live with the consequences.

The need for boundaries might mean that you are very clear to doctors, nurses, administrators [whoever] what YOUR wishes and desires are and be prepared to stand by those requirements. Even at your most weakest moment. In these cases the old saying that ‘fortune favours the prepared’ is probably your strongest ally when it comes to fighting for any of your rights. My husband has been my inspiration here. He always says that the test he uses when asking something of the medical profession he asks himself “is it fair , is it respectful and is it reasonable?” If the answer is yes then he [and we] must be prepared to put up that boundary on our treatment. Nothing about becoming sick should require you to hand in your rights to dignity, care and respect, but alas, you will need to fight for them. If there are readers out there who have no idea what I am talking about then I envy you, your luck and your health care; for those of you who DO know what I am talking about, you are not alone!

Another boundary I never imagined having to re-establish is the social one. Although prior to getting sick I was an incurable people pleaser, I can not afford to let my health be at the mercy of other peoples wishes or expectations. I learnt that very quickly into my illnesses. People still wanted, no demanded, the old me to do what I used to do and behave as I used to behave, but I couldn’t… and I can’t any longer. I had to rewrite the rules and it takes a lot of pain, suffering, guilt and tears when you start rebuilding something like that from scratch. Usually because a good part of your confidence and self worth was tied into how you interacted with friends and family.

Even now, during the hardest years, I cant manage to keep the simplest of dates or appointments with friends and fellow fighters who want to catch up. I have become a recluse in my home, and not out of choice. My home has become my sanctuary and my refuge as I fight battles that very few people ever understand. Days, weeks, months and years can go by with very little opportunity for time spent doing ‘fun’ and entertaining things. This is not how I wanted or planned it to be but it is no longer at my discretion or will. It is entirely up to how capable my body is. I am its caretaker, its keeper and nurse. To add another cliche into the mix  “I can no longer write cheques that my body can’t cash…” todays budget is very, very lean and usually spent by the time I shower and dress.

I also have to recognise that those boundaries must include and extend to those fellow sufferers who would like (and sometimes deserve) more of my time and physical presence. Those who may have a similar diagnosis as me but NOT a similar reality as me. This is perhaps the hardest boundary I have had to work on because within one diagnosis there can be so many shades of abilities and disease activity. For example someone who can still see to drive, or be cable of eating most foods and walking for a reasonable amount doesn’t  always understand that just because THEY can do those things doesn’t mean that I can. People can still struggle to grasp this, and I do too. I wish my level of disease activity and restriction was much less and more like some ‘higher functioning’ Autoimmunes, but I can no longer waste time and energy wishing for things that make no real difference to the bigger picture. I recall a fellow sufferer who would not concede to my right to privacy at a time I was visually impaired, lost my bladder control and could not breath without assistance. They were determined to visit me even though I said my personal pain and dignity required that I be left to rest. Their reason, while seeming logical to them was “…Its ok, [they] can handle it…” I was astounded that in that moment their requirements to socially interact were considered as more important than my rights to privacy and dignity. I was heart broken.

Good boundaries means being able to say NO and accept others personal boundaries too.

Explaining to people my level of abilities, my unpredictable diseases AND allowing myself to set down boundaries is not only my right but my very life  / health depends on it. I can’t afford to feel guilty about it. I can no longer feel stressed or upset by it. when it comes to good boundaries I am not fighting for an imaginary line in the ground, I am fighting for my life and the quality of it. I also wish you every respect and best wishes to you on your journey with boundaries and I hope this helps make it a little easier.

Gentle hugs,
Trish