It’s estimated that in the US some sixty-five million ‘informal caregivers’ save the health system over $450bn a year [1] (6.5 million in the UK saving around $180bn) [2] caring for people at home. It’s not known how many are caring for those with cancer/HIV, but more and more health professionals are becoming aware of the value of working alongside carers in all areas of health provision. Dual diagnosis with cancer and HIV presents LGBT individuals and their carers with a very different landscape to the one they would have encountered even ten years ago. Information is your best resource for navigating it.
If you are caring for someone with cancer and HIV you will find yourselves addressing a wide range of issues together, and some way beyond medical matters. The first topics most find themselves considering, apart from immediate medical needs, are the dual ones of confidentiality and disclosure. (The next ones are probably arranging for a will to be made, something that many still find difficult but is nevertheless an essential step, and also a power of attorney or its equivalent; some care support organizations offer these services pro bono.) Even in countries where patient confidentiality and privacy aren’t considered basic human rights, many governments now understand the need for confidentiality, and that poor protection of individual privacy does more social harm than good. The passing of same-sex marriage legislation in the US and elsewhere has also increased that protection, at least for those able and inclined to take advantage of this legislation, but the needs of those who aren’t able or inclined also have to be recognized.
Many LGBT people diagnosed with either or both cancer and HIV describe the experience as comparable to coming out all over again. Some feel that disclosure is an integral part of ‘owning’ their condition; others may feel that this information is more an integral part of their desire for privacy. This decision has to be an individual’s alone, informed by their awareness of their unique personal circumstances, but as primary carer you should have input into that decision.
It’s natural for the newly diagnosed and those around them to sometimes feel overwhelmed by the bureaucracy they face, but taken step by step this will begin to seem less daunting. Informed decision-making is essential from the start, which is why it is essential to have access to not just information, but the right information. Something as simple as managing appointments, for referrals, tests or treatment, will set in play a wide range of interactions (with employers, colleagues, family, friends, neighbors and so on) that will require discussion. Even scheduling appointments can itself be complicated, although the worldwide Institute for Healthcare Improvement has now produced a wallet-sized appointment card to simplify that, downloadable here: http://www.ihi.org/resources/Pages/Tools/WalletSizedAppointmentCard.aspx
It may also seem that you are expected to become a medical expert overnight, but this too is expertise that comes with time if approached step by step. There are now more and more outreach programs designed to keep physicians informed about the latest data, and it is important that individuals, carers, partners and friends have a good working relationship with health providers. New data become available regularly, and it is a key part of a successful relationship with a physician that you are able to share these data, especially in the ever-growing field of research into the interaction between certain conditions. This is where the resources of national, regional and local support groups can prove useful. Their resources will also help dispel some of the fallacies and myths about the experience of LGBT individuals with cancer/HIV.
Dual cancer/HIV diagnosis also presents LGBT individuals and their carers with a wide set of medical challenges, depending on varying factors including age, ethnicity, gender (Kaposi sarcoma, for example, is more prevalent among men than women, particularly African-Americans, and recipients of transplants, than other groups) [3], sexual practices and lifestyle (alcohol, diet, drug use, tobacco; anything that can have a negative effect on the immune system) [4]. It is crucial that you are able to have a candid discussion with health providers about how these factors might affect an individual’s condition, but, equally, that physicians have an informed and non-judgmental approach to that same discussion.
It’s likely, however, that many of these issues will be social, and emotional. As a carer you may find yourself acting as a translator or negotiator between recipients and healthcare providers. Both single or dual diagnosis can dramatically reshape the life of the diagnosed and those around them, and it helps to understand that the lives you lived before the diagnosis are likely to change after it. As more and more people with cancer/HIV live longer and fuller lives, even the language describing that landscape is changing: HIV has now been a manageable condition for close on two decades, and as cancer therapies develop some professionals are calling for more accurate, and less melodramatic, ways of describing the numerous forms and behaviors of diseases grouped under the scary generic word “cancer”. Numerous writers on the subject, from Susan Sontag to Atul Gawande, have argued that this language is often loaded with negative meaning, and is more harmful than helpful. Sometimes it can be plain inaccurate; at others it can reinforce myths about illness that should have been dismantled a long time ago.
Depending on your circumstances, as a carer you may find yourself advocating on behalf of an individual to governmental agencies, social services suppliers, employers, financial institutions, legal bodies, medical authorities and other agencies. This is where the resources of patient and carer support networks can prove invaluable.
As people found in the ‘buddying’ networks early in the AIDS crisis, the area where people with cancer/HIV and their carers are most vulnerable is often in the day-to-day. Carers are the first-stop call for someone with cancer/HIV, from the most mundane domestic issue to the most serious medical concerns. As more and more health professionals realize that carers provide a unique frontline service, so their importance in the care system grows, but so too does the importance of taking care of them as well, which is why some outreach projects offer respite support, and even residential respite, to carers.
Carers need to strike a balance between their commitment and a realistic estimate of their abilities, taking care to share the load with friends and advisors, and to maintain their own independent lives, both socially and emotionally. Sometimes this can be a basic matter of time management, or domestic skills; at others it may involve profound emotional issues. Here too support groups are able to share the experience and advice of members and advisors. Risks of HIV transmission can, apart from the most exceptional accidental circumstances, be minimized by simple commonsense procedures. There are, however, no commonsense procedures to help the carer deal with the often intense and even irrational emotions that caring can involve. Caring for someone with cancer/HIV can involve happiness and joy, but it can also involve frustration, anger and other emotions that will need to be talked through. Yet it can also lead to new and surprising levels of understanding and intimacy with partners, relatives or friends, and, given the circumstances, a perhaps unexpectedly life-enriching experience.
Notes:
- Caregiver Action Network http://www.caregiveraction.org/statistics/#Economics%20of%20Caregiving
[Based on ‘Economic Value of Caregiving’ (PDF), Peter S. Arno, PhD, US Department of Epidemiology and Population Health]
- Carers UK
http://www.carersuk.org/news-and-campaigns/press-releases/facts-and-figures
- American Cancer Society http://www.cancer.org/cancer/kaposisarcoma/detailedguide/kaposi-sarcoma-what-is-key-statistics
- National Cancer Institute
http://www.cancer.gov/about-cancer/causes-prevention/risk/infectious-agents/hiv-fact-sheet