How illness gives, even as it takes

Final post of three-part series on relationships and needs in my chronic illness/disability context

I initially planned to write on the frustration, internalized ableism, and guilt that comes with having less capacity to support and care for my spouse. It is true – I have less energy to offer and I need more support for caring for myself and accessing the world. My needs have become more in number and in complexity. The balance of needs in our relationship is not 50/50. To turn ableism on it’s head, though: it is actually okay to have an imbalance of needs.

We’ve built a society which does not allow people to have needs and limits, especially when related to chronic illness or disability, but I hope we all see how ludicrous that is. The disconnect happens when putting it into practice, though. We might say “of course we all have needs! Every human does!” but then we go on to shame, guilt, and penalize people for not showing up the same way, with the same energy every day in their roles at home, at work, and out in the world. Some of us have a higher number of needs and/or more complex needs than the average person. Regardless of where we fall on such a spectrum, I have learned it really is okay to have more needs than other people we’re in relationship with. On the one hand, having needs does not make me a burden. We can go even deeper with that thought and ask: what is wrong with being a burden? The word burden is generally defined as a heavy load. Yet, it is an honor to carry burdens with and for people whom I love. Being burdensome – having many and/or very complex needs – is not less human. It is just another way of existing. The problem is in this individualist and ableist (and disablist) society we have created, having needs is considered shameful and devaluing. Having needs which exist beyond invented norms and ideals is doubly shameful. Having needs that are not regularly or adequately supported by our systems becomes calculated oppression. As I have named before (I swear I say this every blog post…) it is all made up! And so we can unmake it.

I have come to realize there are ways I support and care for my spouse – and my other relationships – that would not exist without my learning from chronic illness and disabled experiences, and from my disabled elders and ancestors. Some “gifts” chronic illness and disability have given me I would not want to give back. Perhaps it sounds positively toxic to suggest I could gain anything from illnesses that have taken so much. Certainly some people discuss this through a lens of toxic positivity, but I mean to truth-tell. I try not to sugar coat reality. Being disabled in this world generally sucks. Being chronically ill in any world definitely sucks! I can feel that way and still be proud to be part of disabled communities of people with similar experiences to mine. I can grieve the immensity of what I have lost and the hardships I now face, and I can be so very glad for what I have gained, too.

I have insight, knowledge, and understanding of ableism I could not have from the outside. I now understand to exist in a disabled body is inherently political. For example, access needs automatically resist and highlight societal “norms” which are exclusionary, deadly, and serve a tiny fraction of the population – aka nondisabled, cishetero, white males. (The norms harm them, too; just not near as much as they harm and kill marginalized groups.) Becoming chronically ill further radicalized me in the best ways – which does not erase my grief, loss, and pain since we can hold more than one thing at once!

Currently, my closest friends are disabled and I am seen and understood by them on a deep level I have never experienced in any kind of relationship before (family of origin, included.) And I and my spouse have changed so much from going through these experiences together. Yes, there are many difficulties we shoulder and face, together. And yes, there are gifts in it all, too. We have more time together. We regularly face our vulnerabilities and fears together. We are growing clearer on our needs and how to build with and for each other. We are skilled in navigating complex systems which are disempowering by design. We are unlearning being “fixers” when one of us is upset or dealing with an issue and are better at listening, giving space and autonomy, and supporting in ways that work for the person, instead. We help each other recognize when our actions do not line up with our priorities and values. We know how to repair, and are better than ever at holding ourselves accountable. We have regular opportunities for improving our communication… This is therapy speak for we are learning how to fight better, trust more, and heal trauma reactions when we are afraid in the midst of conflict. We are more practiced at adjustment and change than we would like to be, but practiced nonetheless. And we are learning how to rest and find joy at a whole new level. My need for rest is both a medical necessity and an act of resistance, even though my body is dictating it. Yet, let me be clear: rest and joy are far easier to cultivate when basic needs are met, and when you have supportive relationship (also a basic need!) We are living a completely different scenario as adults than the poverty we both grew up in as children. Many of these things we are now learning were not modeled for us, yet we look to and learn from those showing other ways of being. We are breaking cycles. We are building something different. Living with chronic illness and disability in a world of ableism, eugenics, and individualism is hard in a lot of ways; it also makes things clearer. We can see the bullshit. We understand the need for interdependence. From the perspectives of our intersecting, oppressed identities, truth gains clarity.

I captured some of the difficult balance of all of this in a journal entry last year: I hate that he hast to carry these things with me. And I am grateful he is in these hard things with me. I want him to have ease. I want him to feel supported and cared for. I want him to be seen, known, heard, understood in all the ways he yearns for. I know I cannot meet all of his needs as one person – we all need multiple relationships for that – but I am frustrated by the ways my disabilities and illnesses limit me in my relationship(s). My disabilities and illnesses also give me skills, knowledge, and perspectives we need, though. They act both as hindrance and as aid to my connections. As often as I am frustrated with the challenges, I am grateful for how my identities make me who I am and influence how I show up.

Change has come fast and hard in these pandemic years. And change means loss – even when there are good things that can come from it. All of this adjustment requires processing tough emotions, and finding joy in new and creative ways. Our loved ones experience all of this alongside us. It does not devalue me to acknowledge my hard things are hard on my spouse. Or, that change for me is change for him, too. His experiences deserve honoring and uplifting because he is a human who is in this with me. Though I struggle with internalized ableism some days, I am learning not to be ashamed of needing support and care. I also see more clearly how I can offer support and care for my spouse by seeing and valuing his experiences, too. In shifting to a life with acquired chronic illnesses, we have our individual experiences and our experiences together as partners. I am learning, adapting, and balancing it as best I can with joy, love, creativity, and justice-seeking. My spouse is beside me doing the same – in his own ways, with his own needs, and through his own experiences.