For change to happen we need internal resources such as motivation, time, energy and perseverance. We also need external resources, for example, support from others. We need a creative approach to our challenges and setbacks, but all of this can be a challenge when living with disability.

Why does change seem to be so hard? We know that we’re not happy with our lives now, but change feels hard, impossible even. There can be many reasons for this:

  1. Living with disability brings so many additional practical tasks, getting up in the morning, organising PAs, accessible holidays, form filling, assessments, prescriptions, aids, maintenance on aids and Mobility vehicles – this alone is a full-time job! We may feel we don’t have any energy left to make changes. (Insert Image: What distracts us)
  2. Practical tasks like these seem more important than looking after our wellbeing, probably because we can’t function without our aids/medication/vehicles, but also because they are more visible than our state of mind. And let’s not forget that our whole society is focused more on physical well-being and the body, rather than the mind.
  3. Knowing that many issues with our wellbeing stem from how we respond to how others treat us (organisations, medical professionals, government bodies etc), we may rightly feel anger. Anger that we have to learn how to deal better with their ignorant or hurtful behaviour. Anger that isn’t allowed in (m)any places in our nondisabled society. Anger that gets silenced and isn’t heard. This unheard valid anger may prevent us from making changes (more on anger later). Also, if we feel everything stems from how others treat us, change might feel impossible too. You might feel there is nothing you can do to change it.
  4. Quick fixes – as a society we are all obsessed with quick fixes, we find this even in therapy – 6 sessions is usually all you get on the NHS. This encourages us to think our issues can all be fixed in 6 sessions. In reality, the limit is actually just based on sharing resources with many and reducing waiting lists. When thinking about how change usually happens, it can be helpful to think about marginal gains. These are small, steady changes that build over time. They are more manageable, there is less chance of failure, and importantly when living with fatigue and time issues, 5 minutes 3x a week is more sustainable than 1 hour a day for 30 days. It’s not about the end goal, but the next step forward.
  5. ‘Doing’ not ‘being’ – Our society is obsessed with ‘doing’ rather than ‘being with ourselves’ (more on ‘being’ later too). How we think and feel, our habits and behaviours, have been formed over many years, usually because those thoughts were useful to us then and helped us survive. Most changes in wellbeing happen gradually as we refocus from doing to being.
  6. Resignation: Sometimes we have had so many difficult experiences for so long we don’t know HOW to change and WHAT it would even look like? Or you may feel there are just too many obstacles or that it feels too complicated to see the wood through the trees and identify WHAT you COULD change. I think this is why many self-help books don’t work and why hopefully this resource will be different. Working with a buddy can increase your chances of progress. Your buddy needs to be right for you, helping you to seek solutions and new ideas, to empower you to take a risk and experiment with these new ideas.
  7. Internal Conflict – often part of us wants to make a change, we can see it would be better or more helpful to us, but part of us doesn’t want to do it for all of the above reasons. Often there are secondary gains. This is a tough point to talk about, but important. So what is a secondary gain? Often we have to give up some benefits to make a change. There are things that keep us where we are. Even if our situation is horrific and logically anyone would say it needs to change, even in that situation there can be payoffs or secondary gains keeping us there. You can see examples of this in the frustrations of family members when one member remains in an abusive relationship. The person who is being abused as well as their family members may struggle to understand why the person just doesn’t leave. But when you dig deeper there can be many reasons for staying:

  • It’s all we know, because it’s familiar and we have to give up knowing for unknowing?
  • We fear we will lose some people’s love, affection or attention if we change?
  • Staying where we are keeps pressures or expectations off us from ourselves and others?
  • Staying put avoids more but worse situations?
  • Confidence or finances play a part. I have spoken to many disabled people who have been in abusive and difficult relationships and remain there because they think they won’t find anyone else, they can’t afford to live independently, or they need the physical assistance that that person provides.

Thinking about how we benefit from staying put can be really tough to think about. It may even trigger shame for you. But, recognising there are secondary gains doesn’t mean you like where you are and want to stay there, just that some parts of the issue have benefits.It doesn’t mean it’s your ‘fault’ you are where you are. Our brains naturally don’t like danger and try and avoid it, so they prefe

r to stick with what they know. Helping to identify what benefits you get from staying put can be really useful in helping you move forward, it reduces the hold they have over you. One major secondary gain I want to explore separately is the avoidance of fear which tries to protect us, but then keeps us trapped.